Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

It's still medical evidence.

No it isn’t.

Medical evidence for PIP
Medical evidence can be very helpful when applying for PIP and usually takes the form of a letter/report from your GP, psychiatrist, consultant or other healthcare professional.

From www.mentalhealthandmoneyadvice.org/ni/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/supporting-evidence-for-a-pip-claim/

I know parents where we live who hsve children with PDA but our area won't recognise it. Some children have it listed as a trait but not as part of their diagnosis.

That's because PDA isn't available as a diagnosis in the ICD 11 or DSM5. NHS pathways are restricted as to what they can "diagnose". PDA is always found in autism.

Demand avoidance is also thought to be a common feature of autism in a challenging environment, (1 in 5 autistic children) but relatively rare in it's full form (4 percent of autistic children). Prevalence estimates from O'nions and Eaton 2022 btw.

@ProbablyRomanticised I think that the ideas surrounding rigid thinking are surprisingly...rigid, actually. You are right, it is not all about routine.

My mum is completely chaotic, but she shows rigid thinking in other ways. One day, she decided that she was going to surprise me with a cat, seemingly out of nowhere. No plan or anything whatsoever, I was having a surprise pet and she was going to get a cat. My stepfather then 'ruined' the surprise by telling me we were having a cat, and my mum was distraught. Because it wasn't about the cat for her, but about the surprise, she came home with a dog.

In one way she's very impulsive l, but in another there is this set menu situation where once she has decided something in her head, it has to be that way and if it isn't that way everything is ruined and she will have a (sometimes violent) meltdown or try and twist it into fitting her original plan. When I was diagnosed I was initially under the impression that I fit none of the 'rigid thinking' stuff because I was cool and spontaneous, but I realised that this was very specific to situations I had set up and could control.

So for example I can pre-arrange to not do anything on Thursday and if a friend calls and wants to hang out, no problem. However, if I have planned to watch x TV show in my head, and someone asks 'oh, can you just do the dishes whilst you are here', I might have a complete breakdown. After all, that's not what I was going to do and now I'm filled with anxiety and panic because I lost control. I find this incredibly annoying, but I haven't been able to change it. I can go to a restaurant I've never been to and order food I've never tried before because I'm prepared for that experience, but don't tell me when I'm at home that we are changing the menu from pizza to chips, because I won't cope.

Of course it is. Psychiatry is a branch of medicine. Psychiatry notes go in your medical records.

That's what I've found too re: rigid thinking. People think it is a stubbornness, an inability to cope with change. But what they don't seem to understand is the why. That the purpose of this "rigidity" is to avoid anxiety, because anxiety leads to fear and breakdowns. There is so much chaos going on internally, to be able to just function it becomes necessary to take as much stress away as possible. This is done by having routines or making solid plans that have been turned over in our heads until we know for sure that this is how things are going to go. Maybe even have half a dozen backup plans just in case. As long as there are no surprises...

But then if something changes, something not planned for, panic happens, anxiety floods in, and it becomes difficult, if even possible, to process a new plan because trying to think while your brain is telling you to run is hell. It doesn't matter if it's something big like getting into a car crash, or something small like the milk for your morning coffee being off. It messes up everything.

Quite a lot of autistic behaviours are about managing anxiety. The stimming, the rigidity, the restrictive eating. And PDA I imagine because expectation causes anxiety, and it is anxiety we want to avoid.

The way that learning disability is assessed is via a series of different assessments looking at different areas of function. In some areas our son scored less that 0.01 percentile in others (like visual reasoning) he scored incredibly high. The scores are averaged together to get an iq. Below a set point is classed as a learning disability.

Do you not see that this is exactly the kind of nonsensical assessment system that you're advocating for autism? To try to sum of "scores" across completely different areas of functionality into an average and then categorise people based on the meaningless average of apples, pears and oranges?

@Shelefttheweb psychiatrists are medical doctors, they have to get their medical degree first before specialising in psychiatry.

So why wouldn't evidence from a psychiatrist be medical evidence?

But that’s what diagnosis IS. It’s the grouping together of people presenting similar symptoms in order to learn the best way to care for them.

Kind of, but not necessarily. Three people can have Covid — one with a snuffly nose and sore throat, one with D&V, and one in hospital dying from their own immune response. They all get a diagnosis of Covid, along with whatever else is going on.

With covid you can take a test and you either have it or you don't. Autism dx has changed and as explained by a previous poster what's included in that dx is subject to lobbying by various stakeholders.

An autism dx is so vast in what that means depending on the person with autism, it doesn't really have any proper meaning anymore. You can have people with exactly the same dx but that present completely differently.

I was glad he wasn't diagnosed. Anyone with a ld dx fits that grouping. By not including my son and people like him the ld dx stays true (extremely tired and can't think of a better word but I know there is one).

I'm actually saying people should be grouped better than just given an umbrella dx which can vary in meaning so much from person to person.

Yeesh. Why is it that when someone makes a sweeping statement about e.g. diagnosis as a whole, and you find an example demonstrating how that sweeping statement isn't true, they start bringing up ways in which the specific example you've chosen is different from the original specific topic of discussion?

I obviously wasn't saying Covid is like autism. I was saying that the sweeping statement about diagnosis is incorrect, and demonstrating that using a particular well-known relatable example. I wasn't saying anything about autism specifically at that point.

Because you used it as an example in a discussion about that one example.... autism? 😄

Peiple with autism don’t present completely different as need traits from 3 different areas. It’s a spectrum on which there are differences and similarities in varying degrees. A diagnosis is in no way meaningless hence the long waiting lists. Having a diagnosis helps hugely.

Uh-huh. So if I'm on a discussion about St Paul's Cathedral, someone says "Buildings are made of stone" and I answer, "Not necessarily, for example many houses are made of brick" then it makes perfect sense to snap back with a detailed description of how houses are different to St Paul's?

Grouped how though?

You two keep going on about making it a different diagnosis, but how? What are the boundaries? What qualifies someone as severely autistic?

What if the experts say there needs to be a learning disability present to get a diagnosis of severe autism? Neither of your children will qualify as severely autistic then. Will you be happy with that?

What if they decide it should be based on likelihood of being able to live independently. Well how do you judge that in a 3-year-old? Or will there will need to be a minimum age before assessments can be carried out so that diagnosis can be given or ruled out?

Autism is very obvious in some children from the start. But you have no idea how they will progress. You can't know until interventions and treatments have been tried if progress will be possible. But you need a diagnosis to get interventions and treatment right?

So how does it work? What qualifies a 3-year-old as severely autistic?

What if the experts say there needs to be a learning disability present to get a diagnosis of severe autism? Neither of your children will qualify as severely autistic then. Will you be happy with that?

I don’t think my child is severely autistic at all. I know he is severely language disordered. I know he has HFA, and I know that he is significantly disabled. If experts said that their had to be a LD to get a dx of severe autism, I would observe that that’s exactly what the term LFA referred to.

Would “I be happy with that”? Well for me the major negative of the merging of dxs is that ASD and the appropriation of the term HF to mean “can pass for NT” means that there aren’t quick descriptors for ds so it probably would be easier, yes.

Ofcourse there are people with autism that present differently. Take some of the examples given in this discussion where there are people who clearly can articulate themselves and have a discussion on social media, use social media, want to engage, at least one other poster who said they only worry about anxiety and are trying to alleviate their child's but are sure they'll have a normal life, others who have referred to their jobs etc then there are the psrents/ carers of the more severe who won't ever live independently because they can't don't have basic skills not because they need reminding or because they're not safe (not self harm).

The dx is only helpful where funding is ring fenced.

@JarByTheDoor scautish is that you?

"What if the experts say there needs to be a learning disability present to get a diagnosis of severe autism? Neither of your children will qualify as severely autistic then. Will you be happy with that?"

Yes I would because that description then wouldn't fit him, it wouldn't be true. It would also mean the group of people in his dx has got smaller as they would be removed. It would be a step closer to having a more meaningful dx. As I've said earlier I'd like more language, descriptors, different dx especially with advances in genetics.

I am really interested in why people who don't have severe autism/ lfa/ other end of the spectrum/ whatever term you want to use don't want the dx splitting? So far it seems to be because being associated with more severe people stops other people minimising their needs? Is there any other rationale please?

“The dx is only helpful where funding is ring fenced.“
Complete bullshit.

You said completely different not different.