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.

This is the start of dividing us as a community - my daughters may not be as high needs as your child but they still struggle enormously. I had two autistic children, both with very different needs. I just don't think you can self select your child to qualify while denying others.

Our LA has had a series of complaints over their short break provision. All of it is aimed at kids with adhd, autism or both who are able to be dropped off at a venue and picked up again later. The venues are quite often physical in nature with no thought of other disabilities. All other families are told to request assessment for budgets for PA's which ofcourse are non existant for the majority of families.

I don't even like the term neurodiverse- what does that even mean anyway, it isn't a clinical term.

I think there are a lot of grifters, a lot of parents who are struggling for whatever reason, over stretched services quick to label with something that can't readily treat and therefore discharge and not have fund. The whole system is screwed and doesn't serve anyone. That doesn't include those who want to opt in/ self diagnose and see some pretty serious disabilities as an identity which ofcourse they can then drop when they come to their senses.

This isn't the start, there's an ongoing campaign to split profound autism from the rest of the spectrum due to this particular group missing out on research, support and inclusion in the "community".

I'm not denying others, my son qualifies for RAP on all three of the symbols Merlin has said are a prereq. I'm not denying anyone Merlin is, if you want to put this at anyones feet it should be those who declare "differently abled not disabled", "autism is a superpower"and "only actually autistics can speak for autism" etc- that last one is particularly awful given those with the most severe autism can't self advocate.

Edit: see the Lancet article on why profound autism as a term is required.

2nd edit: i'm glad it's the start of the division, that is what i think is best for my ds.

I'm not surprised in the winter wonderland. I looked at taking dgs last year but the prices were extortionate

Not heard of the other one

Unfortunately in my experience the key element of theme parts is queues. You end up queuing 5 hours for a max of 4 rides

Paulton's Park is in Hampshire near the New Forest. We initially went for Peppa Pig World when DC were tiny which was really awful at the time for queuing as it was quite new, but the rest of the park was/is great.

Ah lol My daughters both absolutely detest Peppa so I can't imagine them taking the kids there and Hampshire is a long way from us

So you want to drop us from support altogether? Instead of working to find a solution that works for everyone in the community? I don't think that's ok.

Btw my elder daughter gets 29 points gor PIP. She is not severely autistic - she is autistic, also diagnosed with adhd, plus epilepsy and a moderate learning disability. She has no friends, attended sen school, doesn't work (she is an adult now). Her sister is supposedly more able, also asd but she has PDA and she is MUCH harder to deal with, always has been. She gets PIP too but nowhere near 29 points.

Anyway, I couldn't advocate to drop people like my younger daughter from schemes like RAP. Being more able plus autism is not necessarily easier. They are more aware of their differences and needs and it's hard for them and carers too.

I work with lots of children/young people with autism who regularly tell me about their theme park days out and the benefits of the disability fast trek schemes which they love! However, many of them are more than capable of queueing with the right support and input. Also providing such experiences really builds tolerance and coping. For those who cannot, why can't DLA/ PIP be used to fund fast passes, if not, what do people think these payments are for?

You work with lots of children on the spectrum but have no understanding on the extra costs of being disabled has and the use of DLA/PIP is cover these additional costs

What about those with learning disabilities who struggle with the whole concept of queuing? It’s not about “demanding special treatment” but they simply don’t get it, don’t understand why it takes so long or why they can’t do what they want, when they want. And can either flop and drop or be a runner. This is how it is for my DD with Down’s syndrome anyway. And that’s why if Merlin continues with this policy we simply won’t be able to go, however much my DDs love Legoland. The standard queues would just make it a no go.

I think this is a toxic perspective to be honest.

Autism isn't some black and white, binary diagnosis like people pretend it is. What differentiates your child with diagnosed autism from another child with autistic traits that doesn't qualify for an autistic diagnosis but may still have the Broader Autistic Phenotype (BAP)? A child with BAP could experience particular autistic traits more severely than your child with an autistic diagnosis but doesn't meet a specific threshold for diagnosis. I imagine you are happy to exclude them from the community but you don't want OP to differentiate her much more severely impacted child from your child when the difference could be far more significant? This binary madness has got to stop!

Most of us have ND traits. Most of us won't meet an arbitrary threshold where clinical diagnosis is necessary. The line has to be drawn somewhere but don't pretend it's some exclusive club where you're in or you're out and that's all there is to it. The fact that your child does currently warrant a diagnosis doesn't mean that they are the same as OP's child or in need of the same support. You aren't all in it together. She will be experiencing things very differently from you and it may well be in her child's interests in some cases to fight to limit support for those less severely impacted so that it doesn't dilute what's available for her own child. Support needs aren't equal and lots of people with autism simply don't need to avoid queues in the same way as other people with autism do, yet by allowing every autistic person to avoid queues it takes away this provision for everyone.

No what you’re saying is toxic. My children are severely impacted by autism , they may not having a learning difficulty( which is different to autism) or be non verbal all the time but they are severely impacted and need a massive amount of support. It’s disgusting to just dismiss their needs because they are different to others with autism.

I'm not dismissing anyone's needs. My point is that you are giving OP a hard time because she is trying to differentiate the support that is given to her child versus other children who all sit under the wide and increasingly meaningless umbrella of autism. You insinuated that there is some kind autism community and that she can't self select her child as requiring support over and look to exclude others but that approach will always leave those with the highest needs much worse off when support is so limited. I have no idea about your daughters so wasn't commenting on their needs.

I think a lot of this boils down to the fact that there is a lot of resistance within the Autistic community to describe how severely impacted someone is. America uses levels but here you just hear that you need to be significantly impacted to get a diagnosis and that you can say high/medium/low needs as this can change over time and in different context. All well and good in helping those that are less impacted feel validated but not so good for those that need to convey their much higher needs easily.

Exactly. Those of us in the middle are just lumped in with those who are able to work, etc

I'm not saying anything about dropping support for others.

I'm saying that i want my ds to have his needs easily and adequately recognised and not share a diagnosis with people who have completely differemt needs and presentation.

Your childs provision or support shouldn't depend on the association of sharing a diagnosis with someone who is more profoundly impacted. If your child loses support as a result of the diagnosis eventually splitting that isn't the fault of me or anybody else who advocates for their loved ones needs to be recognised. That would sit with those who give the support.

I find it quite telling that you accused me of not wanting your child to be supported as a response to me wanting the diagnosis split.

I don’t understand why suggesting splitting the diagnosis makes some people so angry. My son’s autism is classed as ‘moderate’, or if it were to be numbered as 1, 2 or 3, he’d be a 2. “Moderate” just as a word to me doesn’t say anything - it sounds like he’d be a bit impacted day to day but have a relatively normal life. He doesn’t. He won’t ever live independently or have a career. We had a phone assessment this week regarding his ability to work, and it was clear from the questions that the interviewer had already made an assumption that he sits in his bedroom gaming all day and that this is a choice. He doesn’t. He went to special school and gets maximum PIP. My son does not have a ‘superpower’. He wouldn’t have the ability to describe himself as ‘neurosparkly’ or ‘neurospicy’ or whatever, and can’t advocate for himself within or without the ‘autism community’. For him to be understood in life, he needs a diagnosis which shows he has different challenges to those who are able to lead a relatively ‘mainstream’ life, and again to those who are profoundly disabled. Surely it would be to everyone’s benefit to be diagnosed with a more specific term relating to their own challenges.

But nobody is dismissing the needs of others from what I can see. Having language to describe your childs needs must be adventagous to everyone?

Also, you can't be non verbal some of the time- non verbal is a clinical term refering to communication rather than verbal language. It's something you either are or aren't. I appreciate that some people can be selectively mute (i've got a feeling there's a new term for that but i csn't remember what it is) but that is different to non verbal.

To me this is part of the issue, clinical terms that were once ised to help describe those people with severe autism are being used now to describe other things. It blurs the lines and while that as an isolated incident isn't that bad, it's in conjunction with the removal of the high/ low etc and the idea that everyone with severe/ profound autism has ld which isn't always the case, there are some people that are just impacted by their autism profoundly all the time, every day. No spikey profiles, no some of the time, just all the time. Being able to distinguish those from people who aren't as impacted (that doesn't equate to not impacted) is surely a good thing? Your child is impacted by autism severly but in a completely different way to mine. Being able to articulate that shouldn't mean your child loses support.

My son has Cerebral Palsy. This is categorised by a gross motor function scale, also by the type of CP e.g. spastic and by which limbs are affected. It's relatively easy to classify although children may move down the gross motor function scale. My son is GMFCS 1 - he can run and walk and talk and is clearly nowhere near as disabled as someone higher up the scale. Let's be clear though, all Cerebral Palsy is a disability and all is significant compared to someone non-disabled.
I'm not against a classification system for Autism but we must be clear that all Autism is significant compared to someone without a disability. No one should be receiving a diagnosis without a clinically significant impact on their day to day functioning.

Cerebral palsy is actually a really good comparison, because the diagnosis is "cerebral palsy" then there are quantifiers like PP said.

Just a theory of mine but if you looked at it purely through a commercial lens, will Merlin track how much money they now won’t be taking in through their cafes / food outlets etc from people who were queuing virtually and now won’t go at all. I always thought Disney had that figured out with their DAS system. Though given they awarded the catering contract to a prison food supplier I’m not sure they’ve thought about that angle.

I doesnt makes me angry. I respectfully understand and support the desire for profoundly disabled children and adults to get every protection they need. It is not thier job to shield my son. They need a quick way to communicate there needs.

But I am fearful what impact it would have on my son who i would describe as moderately impacted.

My fear is there would be an assumption that anyone who wasnt profound was was capable of mainstream education, work and needed only small adaptions.

That certain things would start to need a profound diagnosis. Theres lots of talk about changing and tightening access to certain disability benefits for instance and limiting ehcps. At the moment things are needs led, but that can change.

I also think if they said profound, moderate and mild. The mild would honestly never get any help or support at all. They would be scared of that and that ok to feel scared. We have a scarcity of resources and negative media pitting groups against each other.

I just think people are frightened over what the future will be through the lens of thier own life and its hard to step back from that.

I think people are probably right to be fearful because ultimately there isn't enough resource to go around for everyone that wants it or feels they need it. The RAP is just one example, but it's true across society. What happens when too many people qualify for special provision that it makes the system unworkable?

This is part of the reason i started the thread. I think this is the start of pushback and things to come. This is part of the reason i want the diagnosis splitting.

There seems to be a lot of ‘politics’ with Autism and it’s very tiring. I’m not even talking about on here- have you seen the Facebook groups? I’ve had to step away from it for my own well-being.