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.

Thirdly those who have two or three rap passes between one family or group so they don't really get timed out as they can use the next rap. Multiple people have been complaining about the fact they can't have more than one pass on one device.

This is going to mean a lot of families cant attend. Not just theme parks but other places merlin own including London eye as you may not he eligible for fast track now.

Merlin own Dungeons, Sea Life, taussauds and even Warwick castle.

Anywhere where previously you may have needed fast track entry or to avoid any kind of queue.

I have a child with complex needs and applying for a Nimbus card is on my list of jobs... but also overwhelmed with tribunal, managing his EOTAS package, working with social services to try and get respite etc.

He absolutely cant cope with crowds, struggles with auditory input, massively complex sensory profile. Cognitively spikey profile. Tourettes, PDA.

I need to look fully but he wouldnt he entitled I dont think which will simply mean we wont be able to go. He has already lost 2 years of school as no placement able to meet his needs. He spent a year hardly leaving house as mainstream traumatised him so much. His world and mine and his siblings, became so incredibly small. Solo parent family with zero support.

We actually were awarded some short breaks funding recently and one of the things I was looking at was a trip to legoland for him and 3 of his siblings. There are aspects of if he would love but we wont manage it without adjustments and another adult.

Currently he is supported 2:1 for the education he gets and we are just managing 9 hours a week of that and able to get out more.

He is desperate to go to legoland as his older siblings went when he a baby. He has seen pictures etc. But it hasnt been manageable the last few years.

To look at my child btw you might say he is 'high functioning ' hate that term. He is incredibly verbal but hugely disabled by his autism and pda often unable to eat or use bathroom or even be in a room with another person. His complex motor and verbal tics can be debilitating. Before you even add in sensory issues Honestly its such an exhausting battle as a parent of a child with complex needs to even get basic adjustments and needs met. This is just another example of the world becoming smaller. But when you cant get an education, cant access healthcare wtc I dont find this surprising. Just sad, especially when the systems are pitting disabled people against each other.

I'd gladly provide an endless amount of evidence for my son. It's probably the only real use of all the reports and paperwork we've gathered over the years. I have no problem with this.

I wonder if a blue badge which is now given to people with behavioural needs as well as physical needs or a social care report would be the best evidence. I find it difficult to believe that people only require adjustments in one area of life, so if you require adjustments for queuing you would likely require help in other areas of life too as you'd not be able to do quite a lot of more general life activities.

I don't want my ds being penalised and removed from society in anyway more than he already is because people are diagnosed with the same condition with a totally different presentation.

I went to a support group after my child received a diagnosis. I was expecting tips on coping strategies, help in education, parents sharing the things that work well and the things that don’t.
Nope. It was all about what free stuff you were entitled to. Obviously covered benefits but extended to what places let you in free as a carer, what places allowed you to queue jump, what evidence each place asked for.
I was so disappointed. The last thing on my mind is how to queue jump at Alton Towers but I felt quite alone at that meeting.

I do really worry about accommodations and support for people with disabilities being eroded due to the increase in diagnosis. It seems like some assessors are either missing the significant impairment part when making a decision, or people are exaggerating their needs to get a diagnosis.

i think what has happened is horrible. They need to rethink it.

I just hope people don't start ragging on the Access/Nimbus card itself. As a physically disabled adult who uses a wheelchair, i have one, and it's been a life saver at places that take it in applying for carers tickets and things for myself.

Tourwttes isnt jist swearing though my hikd can and will swear, current verbal tics are growling and random phrases but they are loud, intense and constant and the anxiety caused by queuing intensifies them. He also has motor tics, lots if facial ones but will fall over because he closes his eyes so frequently. Can't stand close to people because of smell of having people in his personal space all will increase his anxiety and his tics to the point they are constant, debilitating and exhausting for him especially because other members of public notice and he is aware and that again adds to his anxiety.

Its not just a bit of swearing. That is the least if my concerns and actually tou can guarantee in public if my son does swear someone WILL say sonething. I am them forced to explain detail his diagnosis which he hates. Hus anxiety sky rockets and the swearing will just intensify and we will end up in meltdown.

Oh and my child literally CANT go places shops, public transport etc are all a nightmare and take a huge toll and need lots of adjustments and support.

According to the below 3.4% of adults think they are autistic and 1.2% say they are diagnosed.

I often read comments on social media along the lines that we will soon have more neurodivergent people than neurotypicals. It definitely feels like that at times but when you actually look at the figures, it's far from being the case. Figures for ADHD are not that much higher and obviously many people who are autistic also have ADHD.

digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey/survey-of-mental-health-and-wellbeing-england-2023-24/autism-spectrum-disorder

I have lots of evidence for my sons presentation of autism in someways. He has all his diagnosis reports abd his ehcp..

But, i dont recall difficulties in queuing as a result of not liking crowds being in the report or part of the criteria for diagnosis which i suspect could cause difficulties for some people.

It could be inferred from things like the ot report outlines sensory related behaviors, and the salt report covered his lack of understanding if social norms.

But with everything being such a wide spectrum I dint know if we will see organisations happy to just accept diagnosis alone as evidence of a need.

The blue badge idea is interesting though.

I considered starting a thread about this, thank you for making one and writing such a well written post. I am so sad for all of the people who had found a lifeline in the RAP system that opened up some lovey days out to them, and have now had it taken away.
My child has complex needs and diagnosed autism, and it’s beyond frustrating the number of people who don’t understand that no, he honestly cannot queue, crowds are not the issue, he doesn’t and cannot understand queuing for the sort of times required at CBeebies or legoland, and that means that this policy change indirectly discriminates against him and others with similar needs, because he is disproportionately negatively affected by a policy decision due to his disability and I cannot see how it can be adequately justified.
and telling people to use their children’s disability benefits to pay for fast track queue passes feels completely not the point. I realise that somehow people have managed to abuse the system over the years, (I don’t know how as we had to provide paediatric letters and evidence to be issued our now useless RAP pass) but I understand that it had, and no probably some of the people with passes didn’t genuinely NEED them so something needed to be done, but what has been done has been so harmful to so many of the most vulnerable in our communities, and I always found the virtual queuing system to be really sensible, as I don’t think it should be that anyone shouldn’t wait, that’s not the right thing and isn’t fair, it’s just about not being able to wait in a physical queue, so a reasonable adjustment was to wait in a virtual queue for the exact same amount of time as everyone else.
I really hope that there is some reconsideration on this.

One of the reasons Asperger's has been merged into the autism umbrella because doctors often struggled to tell the difference because autism is a spectrum disorder.

Also, giving an Asperger's diagnosis is more of a reflection of how the person seems to the observer ie normal IQ and speech, excellent at masking etc, rather than a reflection of the internal struggles of the person.

I would have had an Asperger's diagnosis in the past, yet my psychiatrist thinks I have 'serious impairments'. Nobody who knows me would believe this because I am very intelligent and absolutely fantastic at masking.

I have to be honest. My ex gets the Merlin pass. He is late diagnosed adhd at 50.

You get to take 3 people with you in the queue. He will go to Thorpe Park and takes brother and kids. They go with him because it means they don’t have to queue for rides and have a more productive day there. I am not sure they would bother going if they didn’t get it…….

If 5% of the population has a diagnosis, why are 44% of people in a theme park using a RAP? No wonder the parks are clamping down.

I didn't mean a diagnosis report, i meant a social care plan or report. If somebody's needs are such that they can't access a theme park because they would be overwhelmed by people, noises, smells, not understanding queuing, not understanding time, their behaviour would impact others etc them surely they would need support in more places than just a theme park so i find it likely that they'll require social care intervention.

Probably because many of us don't go to theme parks

A lot of autistic kids are OK with travel - it's predictable on the whole and airports often have a quiet area for them.

Queues in theme parks are usually going to be an unknown quantity - noise levels and types, environment, behaviour of others etc in a place you have never been to before are much less easy to plan for and predict.

My child has ASD - they dont like crowds or queing - but they can manage on quieter days in the park. I think the problem is people are taking the piss. I think i could probably get a RAP pass for my son if I tried previously - but he doesnt need one!

Dare i say SOME ASD children would actually just benefit from having some distracting toys/games or conversations to help them manage the ques and crowds around them (like my child). However, some parents are frankly - just too lazy and entitled to bother trying this - to them they NEED a pass - theres no question about it.

Of course some ASD children really do need their pass - and its not fair they will now struggle to receive one.

You mean people who aren't autistic but don't like queues or crowds self elect to stay away..... Who'd have thought.

Because each person can take up to 3 others with them. So you could only need 11% of people with the card to equal 44% of people in the park getting the benefits.

11% is still well above 5% diagnosis rate.

I just wanted to address this, I dont have a Merlin Pass, so it's neither here not there to me.

But, i do know families with children who have complex needs. Parents need to plan leisure time much more comprehensively. The children may not be able access standard weekend sports clubs, but are 'too able' for SEN respite clubs. The children aren't invited to sleep overs or playdates as other kids would be.

But the children need structure during their weekends, which is where the Merlin Pass comes in.

I would say it is likely thst more families with childen with ASD/ADHD use Merlin for the above reasons than 'regular' families for the reasons above.

Because it wouldn't just be for those with ASD?

Maybe although anecdotally I think it's also because the Ride Access Passes so make the Annual Passes much better value because you can generally have a better experience and get on more rides than the average customer. When I last went to Alton Towers I got on three rides and that's as it! I spent the vast majority of the day queuing. It was horrendous! I would never invest in an annual pass

This is my child ie overwhelmed by people, noise, smell, sound etc along with other needs and yes we do need social care support. I am fighting for it. Just like I have to fight to get an education.

His behaviour and needs has a massive impact on others. I am laughing hysterically at the idea there is support available. Its taken a year battling local authority going to stage 2 of complaints oricess where they were found at fault for not supporting need. They have ignored the Indeoendent officers report and unless I go to judicial review nothing I can do. Even then they cant be made to do anything.

There is no school or alternative provision that can meet his needs hence building bespoke EOTAS package. Every person calls him complex. When we finally saw a neurologist re tics, absence seizures they asked who his paediatrician is.. he has NEVER seen a paediatrician despite being on waiting list since age 4. He is now almost 10. I ended up using credit card going privately. Seeing same team as I would have done on NHas. Got diagnosis and they re referred him back in and said he needed to be seen by Neurology.

Neurology has previously refused because he is autistic.. diagnostic overshadowing. So they couldn't be bothered to even see him.

The systems are on their knees through lack of investment.

We have a multitude of reports documenting his needs NHS now, 3 Ed psych done by LA. Two OT reports all detail complexity and severe and profound impact his needs have on participation in daily life.

The Local Authority have still refused support and I have had to fight every step of the way. They stall, they breach legal deadlines, they ignore tribunal deadline.

Yes I follow proper complaints channels. chase, have even had compensation, apologies anc then they continue to behave in the same way.

But lots of people look and see a verbal child and assume ability. You have said similar yourself. Stupid labels like high functioning etc all miss the bigger picture. Stop pitting disabled people against each other.

My case is not unique or unusual.