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.

How do you know? I am so fed up of this binary talk about ND/NT especially with Autism when we know the Broader Autism Phenotype exists and actually there are a lot of so called NT people around struggling with autistic traits.

My 9 year old son for example isn't autistic but won't queue for more than 10 minutes. Maybe 15 at an absolute push. He finds it boring and hates being crammed in with lots of other people. He flat out refuses to queue for longer no matter how good the ride is. This means Alton Towers etc is a no go for us and I'm sure we aren't the only family like this.

Yes, everything other than a physical disability. Which is actually why there is such an outcry and not just a belittling of the needs of those with autism as the OP has suggested.

They should offer reduced capacity ASD days so that queues are naturally shorter, but they won’t as that would hurt profits.
OR Discounted queue passes where the proof needed is a dla award letter rather than a paid for nimbus card.

Apologies I was one of the people who used that term. Its hard to know whether to say Asbergers, functioning labels or support needs. But you are right, autistic people have spiky profiles. Just because someone can plan, organise and execute an piece of research doesn't translate into them being able to plan, organise or execute any other tasks.

I have a child with autism and we are awaiting adhd diagnosis too. On the whole no they can't manage waiting. But his tolerance at the start of the day will be greater. So he may appear fine in a queue at one stage of the day and then you may see us go home early because its all become too much. Much to his brothers disappointment although likely adhd too so often aren't far behind him in terms of coping ability.

We have been to legoland once As we was gifted some money towards it by a very kind family member.We paid for fast passes as we didnt have a diagnosis then but knew it would be a struggle. Whilst they were helpful it was still very hard. We went outside peak times on a rainy day where it wasn't too busy. It was still very hard for him to wait so we skipped half the park. We likely won't be able to afford to go again. They all absolutely loved it.

So I don't know how anyone could tell by looking who warrants a pass or not. We only ever see a snapshot. My children have good days and bad I have no idea when they are going to happen. We booked tickets for Norfolk winter wonderland on the day it took him 45 minutes to calm down from a meltdown over getting dressed. He tolerated an hour of winter wonderland. It wasn't massively expensive and we obviously always live prepared with the fact we may not make it to a venue at all,booked tickets or not.

We can't afford many outings it's been incredibly difficult for me to work because ny child can't always access school/ no sen childcare at all where I am. So we can't afford to go to theme parks mutilple times to try again or separate trips for my other children. So anything that remotely makes it more doable for us means a massive great deal to us.

It feels just another barrier for us to have to manage when life is already endless barriers to simply exist. Let alone have some kind of joy. My child already feels shut out of a world he can't access like he sees others can.

What profits? Merlin made £500 million loss in 2024. The idea that they can afford to run low capacity days is ridiculous. They are a major employer and it wouldn't do anyone any good to see them go out of business.

You do realise that you have to submit evidence to get a Nimbus/Access Card? Taken from their website (https://knowledge.accesscard.online/faqs/what-types-of-evidence-or-supporting-information-can-be-taken-into-account):

Any supporting evidence you can provide such as;

• Confirmation of Disability Living Allowance, Personal Independence Payment, or Attendance Allowance
• This must be recent and clearly show the Name and Address of the recipient
• This must clearly show the rates of Mobility and Personal Care / Daily Living components you have been awarded
• We cannot take into account Covid Extension letters, ESA, UC, Blue Badges, Appointment Letters or Christmas Bonus letters
• A letter from a medical professional aware of your needs
• This must be recent and clearly state the diagnosis and impact of your conditions described in your application.
• This must be on surgery/official headed paper, signed and stamped.
• Confirmation of diagnosis alone for conditions with variable impact may not be enough to process your application
• We may be able to take a variety of other documents into account such as occupational health reports, care plans, OT assessments.

I do think the RAP system needed changing as it was used by so many it became defeating in that you can't go on a whim as it needed prebooking with little and unguarenteed availability on the day and even when in some queues there was so many people queuing it defeated the pass.

I have been in queues and heard people discussing how easy RAP was to get and how they don't really need it which is quite grating. I've also seen people asking to take more on the ride than +3 and being quite aggressive to the staff (usually teens/ early 20's).

We've used the RAP for well over a decade with ds and seen many changes. The biggest is the number of people using it.

My big worry is how other venues are going to do similar and how this way of thinking will transfer into wider society. I have seen refular comments about benefits and school provision in regards to autism, some of which I agree with.

This is anotherreason Iwould like profound autism to be separated so that people like my ds have some protection from this sort of thing which I know is self serving but I see his needs as being incredibly different to the majority of those with the autism dx and those in the RAP queue.

Yes I’m aware but the process has already been done by dla in a lot of cases so surely it cuts out time and cost to accept dla award as proof ?

im not questioning validity of a nimbus card im saying I feel it’s unfair a disabled person has to pay for something to prove need when a free award letter should suffice

It’s because the Nimbus Card can be electronically synced with the RAP and a DLA award letter typically just shows the level awarded for care and mobility, not the needs behind it. Someone could be aware high care and be unable to stand but someone else can stand. The DLA paperwork doesn’t provide the detail needed.

The thing that isn’t taken into account is that the vast numbers of people using the passes meant that it was no longer an acceptable accommodation for people with mobility issues.

It’s not that mobility issues are more important, but by having so many passes their needs were no longer being accommodated.

People should be cross at those who were playing the system and requesting passes when they didn’t need them. Merlin had to do something.

Oh dear, we have a nimbus card and was planning on going to Legoland this year. We've been previously with the Ride Access Pass and would recommend it. It works for my son with ASD as access isn't instant but it allows you to plan out, reserve your next ride and wait in a calmer area.

What's particularly disappointing is neither Nimbus or Merlin have contacted pass holders to advise of these changes. So I don't know if my son still qualifies.

If you check through this link, it will tell you: https://app.accesscard.online/check-details/

Merlin have more details on their website. They seem to think that rather than making an announcement, they can rely on people to keep reading online in case of any changes.

If you click on 'Forgot details' here, you get an email confirming what symbols are now on your digital pass. I did this yesterday and it confirms that ours now is difficulty with crowds, so we wouldn't fall under the RAP eligibility.

https://www.accesscard.online/apply-or-renew/

Just to be clear you had to book the access pass tickets and an entry ticket.

There was never any issue with too many access passes being issued vs regular ticket because merlin if they wanted to could control the amount on offer and cap it if they wished.

Hence they suggested booking well in advance to secure a place.

As other posters pointed out its not a queue jump. Just wait and "queue" elsewhere.

I think this is a reaction to all the SEN press and "over diagnosi" nonsense

Im sad for the people who can no longer get attend but was their fun time - which is sometimes so.very limited

Ps: buying a sensory bag - think we have all the strategies in place we can when heading out and then visit on quieter days
.. right just remove them from school... wtaf!!!

Or visit merlin quiet room... to do what think "oh isnt it nice we are at.... lego.land, chessington, etc

Ffs

And my child isnt really impacted

Perhaps I’m pessimistic but how exactly is Merlin planning on having a suitable quiet and sensory space for all the people who might need it at the same time (especially since it is acknowledging that the eligibility requirement is that the person has difficulty with crowds). The only assumption I can make is that it knows a significant number of those eligible people will no longer be visiting.

@Perzival but surely with profound autism and those RAP cards being removed from those that cant cope in queues so therefore wont go, you will return to the prior experince you had. So thats good no?

The booking system did need changed as you cant go on a whim... but im not sure it can reflect the much wider debate on splitting out autism and be left to nimbus and merlin to execute that well either. You would need a certificate with an autism grade and and then we all would be spending time money and effort arguing with professionals involving solicitors and creating a larger SEN economy where the only winners are the legal team and private professionals. And we would all lose our minds.

The muppets in society ruin it for the rest so given your post on behaviour of some you have seen, then unfortunately merlin have come.up with this shitty new approach.

Maybe if you had 2 or more symbols or something they could grade it that way... 🤔

@FuzzyWolf @IndebtedtoTomNook

Thanks, it's been changed to difficultly with crowds.

I will ask for them to reconsider that as I don't think it's consistent with the information I provide last year on how his ASD affects him but I'm not confident as they do seem set that not being able to stand for long periods is a physical condition. He would self harm or be violent to us if he was in a queue for 60+ minutes. Obviously I wouldn't even attempt it.

But hey, we had a good run of "taking the piss" with our pass.

There will be a queue for that room 🙄

Yes I accept and agree that this will better for my ds and by extension make it easier for me and my dh when we take him in terms of RAP. RAP is an incredibly small part of our lives though which is why i'm worried about the bigger implications as society gets use to dismissing autism.

I can see that as more people are diagnosed, less adjustments will be made and while I think/ hope he will be accomodated by the wider implications of his dx and other dx's he has, severe autism (as per his dx paperwork) is his main 'need'. I've thought/ worried about this for quite some time with the rise in news articles etc and the actually autistic movement. If society are going to move forward with the idea that because so many people have autism that it's the norm where does that leave people like my ds. I do know some families with loved ones similar to ds who only have the autism dx.

There doesn't need to be more profiteering from the system. Many people are given one of the American style levels nowadays too. So there already is a kind of system at play. I just don't thonk it's good enough.

Profound autism is a term being used more widely now to separate out and as a way to convey the needs of this group. There have been multiple papers and articles written on it. I don't see it catching on over here as well as it is in the US.

Ps thank you for replying in terms of the broader picture rather than just RAP.

This describes my autistic DS exactly. I'm absolutely gutted about the change, theme parks are one of his special interests, Alton Towers is his happy place and now its ruined.

Not so sure about how strict they are at Nimbus. My daughter is disabled and I ticked the “not queuing” box. She can queue, she has no issue with it, but at a few venues it can be problematic because of the layout. I expected a challenge but got none. The only evidence I had to provide was her DLA letter and that simply states what allowance she gets.

We've been unable to get the ride access pass for a while, ever since they stopped accepting a dla letter as proof. My youngest had a letter from his consultant saying he can't queue but that was when he was 6 and he's 11 now so most places won't accept it.

I'd love to take my dc to a theme park and lots of other places on quiet days with fewer crowds/queues. But school protest when I take them out of school to go to the hospital so they definitely wouldn't let me take them out for a trip to legoland.

I think it’s very sad that there are people who are pleased about this change and support it, without seeing that what they are doing is supporting companies becoming less inclusive for those with disabilities. What’s worse is that some of those people have disabled children of their own but because this change doesn’t negatively impact them, they agree with it. However, in time, the likelihood is that these restrictions will continue and they will be impacted and will wish they had spoken up sooner when there were greater numbers opposing the change.

I say this as someone who is not negatively impacted by the RAP change and will probably in some ways benefit from it.

I think from private support groups I am, the vibe is that splitting out autism into sections then also splits out perceived suffering.

Eg high functioning doesnt mean easy life can cope with everything. And not easy for parents / carers

Its incredibly hard both ways.

I think there is space for the definitions but not a way being for society. Just look at special schools and finding the "right cohort" its a minefield. But I assume maybe if more profound and essentially less nuanced than high functioning maybe less so. I dont know as thats not my child's presentation.