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.

But they have the same difficulty as a child with a disability in this particular area. Whether it's part of a wider disability or not, the difficulty and need is the same. He can't tolerate queuing. Very few people are completely NT and I strongly suspect this is an ND trait that he experiences even if he wouldn't meet the threshold for an ND diagnosis because he doesn't have enough other traits.

I also basically can't take my son to a theme park without that adjustment. How are we different? Both our families can't queue for rides without an adjustment.

Merlin have u turned

Personally I think it’s because your son hasn’t lost an adjustment that he already had.

It would be like if someone took your queue jump away and just told him to get on with it, which you know he can’t.

My son wouldn’t tolerate even a priority queue, and under the previous terms would have qualified for a RAP because he would have been categorised as “can’t manage crowds” or whatever the term was. Removing that is removing a disability adjustment that he already had access to, and offering a less suitable alternative that isn’t actually adjusted to his needs.

But if my son was subsequently diagnosed with a disability would you think he was less worthy than your son because he never had the adjustment in the first place?

What if even without a diagnosis my son objectively has a lower or the same tolerance to queue as your son? Surely it should be based on specific need rather than diagnosis?

I'm just struggling to understand really how your approach isn't basically gatekeeping advantages for your children and not having any regard whatsoever for children that could struggle with exactly the same thing. This push towards binary thinking is really problematic. A disabled child won't necessarily have a greater level of challenge in a specific area compared to a non disabled child even if it's an area related to their disability. The science is clear on this but yet nobody from the disability community really seems to care other than to ring fence their own privileges and push the binary distinction as far as possible to stop provision being overwhelmed.

Merlin have sent emails saying they are reversing the decision but are going to have a bigger consultation on future changes which they feel are needed.

I’m absolutely all for it being based on need, because I’d be the first to admit that my child doesn’t have the highest needs. He has more language than some of his peers, he can tolerate 5-10mins of waiting - with difficulty, but he can.

The issue is that we need some way of evidencing that without it being based on parental view, because I could have quite easily just said I can’t make him wait 5mins, and you’d have had to believe me.

That would lead to all manner of issues. Overuse of a system intended for those who genuinely can’t tolerate something.

Once we have that evidence, whether the child has a registered disability or not, then adjustments should be made for it. Mine has that evidence because of his diagnosis, you’d have to somehow get it noted that the issue exists, by someone objective.

But if and when both children have the same evidence of need, sure - the same adjustments apply.

As it stands (before the u turn) we had recognised evidence of need, and an adjustment for it, that had been removed.

As a mother of a child with a disability, I can see the benefit of the RAP scheme, although I have never used it (my daughter did, and still does qualify). We used our DLA to pay for fast passes.

As a professional who deals with business management, finances and resilience as a part of their job, I can see the need for some refinement of the scheme from Merlin’s point of view.

Even with the insight of being a parent of a child with certain difficulties, I do find it a little challenging to get my head round the concept of taking a child who struggles with crowds to a place like Alton Towers. I understand that is because my child doesn’t have THOSE difficulties but I’ll be honest, every time I have been to AT I have struggled with the crowds both in and out of queues.

I also know of families whose children don’t have issues with queueing but have qualified for RAP and used it to its full extent. On some of the facebook groups I am on for my daughter’s condition, I have seen posts literally stating diagnosis followed by the phrases ‘What can I get for free?’. Other posts when discussing the access card itself in respect of a 3 year old child arguing with posters that they should be entitled to plus 1 on access because their child has a disability, refusing to accept that they would need to be there anyway to care for that child because of their age. Individuals bragging about effectively abusing these schemes to benefit themselves where they can. Ultimately, these are the individuals that ruin it for those that do need it, which is how Merlin have ended up in this position to start with

It’s been widely reported on this thread and in the media the proportion of individuals in the park on any given day using the RAP scheme - from a business point of view it isn’t sustainable.

@Worktillate

I have to say I agree. I mentioned previously I would never take our ASD kid to Alton Towers unless it was a specific SENd day with lower numbers, which they don’t offer. He does however have “those” difficulties.

I also do find it strange that when we go out as a family, often one of us could go using a Carer ticket. When surely, most children go with both of their parents, or the one that they live with. We’re his carers because we’re his parents, and in most contexts we’d both be going anyway.

There isn’t a reason, up to a certain age, to give parents access to cheaper tickets that they’d have to buy anyway regardless of disability. The only context I’d say that’s justified is when it’s a “low income ticket incentive,” because many families with disabled children are non working and on UC etc, so can’t afford to pay full price.

Had this email.

Sorry my post must have been confusing, as you've miss interpreted what I was meaning. I've tried to re explain below, which should hopefully clear any confusion.

If someone (disabled or abled) purchases a fast pass then they are paying for a privilege and therefore should receive privileged access, which is above what the ride access pass offers.

The abled who can't be bothered to queue, is completely different to the disabled who can't queue, be that through a physical disability, or a neurological disability where the person doesn't understand the concept of a queue etc

Apologies if this has already been answered but I haven’t had a chance to read the full thread yet!

My DS is autistic and would be considered at the ‘low functioning’/ high needs end of the the spectrum. Mostly non verbal, low ability to self care etc. Functionally he’s probably around 5yr old level. He’s turning 18 and I wanted to take him to a theme park for his birthday but he has no concept of queuing and gets very excited about the rides so would become very distressed and have meltdowns if made to do so. He just simply doesn’t understand waiting his turn for things, we have tried but now he is a foot taller than me it’s quite difficult to stop him from charging to the front! We’ve been to a theme park once and had disability wristbands that allowed him to go through the fast track queue pretty much straight to the front and this worked brilliantly. Am I to understand that this has been changed and they no longer offer this?

If so that would be a real shame. We simply won’t be able to go if he has to queue, it would just be so stressful for everyone involved (including everyone else in the queue!) it wouldn’t be worth it 😞

With the long waitlists though kids are taking years to get diagnosed. So many families will have taken young kids to theme parks ages say 3-10 and struggled with the queues and not really understood why.

I knew it would be reversed there was just so many people outraged, though it foes show the scale of the issue.

They did change it so that only people with one of three symbols representing need on their nimbus access cards could get RAP. They were difficulty standing, level access and urgent toilet needs. They have u-turned on the decision but it is likely they will make futher changes at a later date.

My don is a similar age and is also low functioning etc. If you haven't already apply for a nimbus access card for him, just make sure that all his needs are represented. Most of the theme parks and other venues are asking for this now in order to get adjustments inc carers tickets and things like ride passes. If you are going to take him to any of the Merlin parks you need to book the RAP well in advance now and they do run out. I believe they have some you can reserve within 48 hours of the visit but it isn't guarenteed that you'll get one.

It's helpful for if you have to leave early because of your child's needs. We have been to places and had to leave early, so it's been a blessing financially that we haven't had to pay full whack when we've only been at the destination for a small proportion of what we otherwise would have if we didn't have a DC with disability.

I think the fast passes are privileged because you aren't timed out of a queue line.

I agree with you with all you've said. We do have a rap, but in the event of not having it I would personally have used my child's DLA. My child has had thousands of pounds worth of private assessments, they have private therapy each month, specialist foods and our DLA certainly doesn't cover all the expenses we've incurred over his life... I am his carer and he is in mainstream school with an ehcp... but having the DLA makes me feel I can justify buying the fast pass for him +1 more than I could without the DLA.

Some of the responses to the removal of RAP reminded me of the old saying "When someone is accustomed to privilege, equality feels like oppression.” It is very hard to give up privilege even if by keeping hold of it you are adversely impacting those with a greater need. There is some major cognitive dissonance going on.

I think it would be helpful to reset what 'normal' is especially regarding children and queuing. Studies seem to indicate that the average 8 year old child would struggle to queue more than 20-25 minutes. How low would their queuing capacity have to be to warrant something like RAP? I would argue possibly less than 10 or 15 minutes? There has to be a general acceptance that most children can't handle the super long queues and therefore somewhere like Alton Towers isn't for them. This will be a very hard pill to swallow for someone with a RAP who is used to being able to access the parks with someone of that age but they aren't just enjoying equal access, they are enjoying preferential access.

I think this is the only fair way that Merlin can fix this. RAP holders should have evidence to prove they have very low tolerance for queues. Not just the low tolerance that is pretty normal amongst lots of age groups and prohibits non disabled people from going to the park too.