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.

"Lots of diagnoses cover wildly varying presentations with completely different symptoms. ASD is no different".

I can't think of another condition that can vary between being permanently so debilitating and hardly impacting where you're not allowed to describe or categorise without the hassle that has been demonstrated on here.

I also can't think of another dx that was included in a different dx so that people with the first didn't feel that there dx was lesser.

it wasn't a perk it was factual to the dx, it only stopped being when the dx was changed so that it included many more presentations.

I meant it was a perk of the diagnosis in comparison to the many, many other diagnoses which have always encompassed a wide variety of different presentations and severity of impact on daily living. Losing that must be annoying, but it only puts you in the same position as many other parents of disabled children — if it weren't for the fact that you don't have access to uncontroversial ways to further specify.

In the absence of being able to adequately describe to distinguish a new dx is what it would take.

So it sounds like you would actually be amenable to having better ways to talk about where your DC sits within the broader diagnostic category of autism spectrum disorder, rather than overhauling the system yet again to split it back into separate diagnoses? I think this is far more practical.

www.psychologytoday.com/gb/blog/inspectrum/202112/lancet-commission-calls-new-category-profound-autism

There is already a movement to break off the most impacted inviduals and for the use of profound autism. The changes in the dsm have been criticised because of many reasons already covered in the thread. I do think the dx will change and hopefully further changes too.

I've already conceded that there are difficulties around being "allowed" to specify what sort of difficulties the diagnosis represents in any individual, which needs to be tracked because it's impractical with a diagnosis with a broad range of presentations to not be able to specify.

But do you really think that's why the different diagnoses were merged?!

*tackled, not tracked

"it sounds like you would actually be amenable to having better ways to talk about where your DC sits within the broader diagnostic category of autism spectrum disorder, rather than overhauling the system yet again to split it back into separate diagnoses? I think this is far more practical."

Yes, I would but I think that ship has sailed. I already do say severe autism when I need to and I have been known to say alongside it something like "not what you see on TV, the more complex side of autism".

Using severe/ profound/ classical/ kanners in the autism community does just lead to grief more often than not.

In addition I'd like those with severe mental health needs to be able to say that their needs are severe mh not autism.

other end of the spectrum

The spectrum doesn't have an "end". It's not a line graph. It is a spectrum.

"do you really think that's why the different diagnoses were merged?"

Not the only reason but it does play a part. Lobbying is a big part of changing the dx.

But their needs are not just severe MH.Autism is part of it and why their MH struggles are so severe. Their autism diagnosis are used to help treat their conditions because it’s all tied up together.

No they don't just have mh or asd, they d have both but it is the mh that is severe not the autism. Their mh can improve hopefully with a full recovery. People with severe autism can't make a full recovery, it'll always be there.

It's 2 separate dx like adhd or dyspraxia. All of them are common with autism but can exist separately to It. All can be severe and it can be difficult to split them apart. However someone who would be regarded most as having severe autism would be what was previously referred to as autism, that kind of presentation. Someone with autism and severe mh wouldn't present in that way.

I was going to inc ld as another example but thought better of it due to the number of people on the thread who think severe autism and severe ld go hand In hand.

Yes, it was well put and focused. The thread is about dx, and understanding what that is and why that’s important in that discussion.

You can be one end or the other of a spectrum I think. Usually outside of autism it is used for a range of merging value. I expect most people are familiar with the visible light spectrum running from red through orange, yellow, green, blue, indigo, to violet. The wavelength changes but we have names for different points on that spectrum. The names allow us to discuss and draw conclusions about the areas of the spectrum described as that colour. We know for example what RED looks like, we also know what REDDISH looks like and we can share experience of this colour. We can tell our children to help the puppy with the red collar, we can tell them the redder the fruit is the sweeter it’s likely to be, we can show them red sunburn and explain when the sun does that it damages. Blue is another colour, it’s not less of a colour because red carries more baggage.

I’m fairly unmoved by the upset that might be caused by separating the dx out again, because that’s already happened to autistics (original recipe). “It will be difficult” is pretty much where many of us are already. I personally think it’s unlikely that HFA dsm4 are the same group as articulate ASD DSM5. I think it’s likely they share superficial similarities and particularly anxiety induced difficulties but I think they are different. My interest in dx is almost entirely driven by the need for clean research and the ability to observe outcomes of different approaches to support. I think it does cause totally avoidable damage to my son to have to detail and explain things that make him feel unhappy. I also hate the witch hunt and goading and unpleasantness that accompanies any discussion of autism now. Ours is not a niche experience, there are huge numbers of silenced autistic people who’s only hope of being heard is through their parents or carers. Many of the most aggressive have little or no experience of minimally verbal autistics. They certainly do nothing to help in anyway.

Possible interest
…….an article re additives in processed foods. E380, E381 and E382…..and a link with autism. Found in breads, cheeses etc
‘elizmalambert.com- link between processed foods, gut bacteria and autism’.

For example. definitely keep away from anything made by Warburtons..they seem to put it in everything.

Mine was born as he is, he didn’t munch his way to autism.

What article? What are you talking about?

No there won’t be a full recovery from their mental health because of the way their brains works and their autism. They can’t replace their brains or how they’re wired. Sensory difficulties and severe anxiety from traits needed for a diagnosis won’t disappear.

How much does a diagnosis need to be split up to be helpful? Would thousands of different labels be helpful? Why is autism a better label for the more severely affected than the less severely affected? Are you more purely autistic the worse you are affected?

At the moment people add their own extra to the diagnoses anyway. ‘Severe’ autism usually refers to those who won’t ever live independently and have learning difficulties while ‘mild’ autism means those who will live relatively normal lives again the majority in society, even if they need to put their own systems in place to help.

Rightly or wrongly people will try to describe such a huge range of abilities if under one umbrella term.

Given the massive issues many people with autism have around food I think comments like this are down right dangerous.

"they don't just have mh or asd, they d have both but it is the mh that is severe not the autism. Their mh can improve hopefully with a full recovery."

You really don't get it.
The mental health difficulties are directly caused by being wired differently in a world designed for NT people. That (the expectations and sensory experiences of an NT world) will never change. It's really important to understand that.

It's like saying for your son it's the learning needs that complicate the picture, not that the autism is severe.

When my son was 3 he was delightfully advanced with a huge vocabulary and mildly quirky.

Come and help me try to get my son up for his universal credit review and then tell me he is mildly autistic because when he was 7 he could talk at length about the structure of the nucleus of a cell. I ran him a bath last night that he didn't get into, so he'll be attending the interview having not bathed for a week. He doesn't shower as he can't cope with the feeling. He didn't eat the tea I cooked him because of his anxiety about this morning. I have had to choose and lay out his clothes; if he dressed it would be in whatever clothes he found regardless of how dirty. I expect to find him curled up in a fetal position and to have to physically guide him through every action and out to the car. He will be unable to speak at all in the meeting and will probably cling to me like a 4 year old. He is almost 22 and has 7 GCSEs at grade 6 or higher.

That food article is ridiculous and full of stuff that sounds clever - they haven't linked the original research, just an article about it and then random bits of research and food labelling information.

They are selling services and one is a naturopath and functional medicine practitioner and the other a nutritionist. I need to find out what qualifications a functional medicine practitioner has.

probablyromantisised I hope todays meeting is as stress free as possible for you both.

i think too many people correlated being academically able with being able to live an independent life when for so many that’s far from true because to be able to name every king and queen of England in order uses a very different skill set to being able to get yourself out of bed in the morning.

Autism is not the same thing as struggles with MH. It’s a developmental disorder the impact of which fluctuates as the autistic individual develops. I don’t really subscribe to the “wired differently” model, but I do think all talking therapies are problematic in a group with communication differences and medication often leads to different levels of side effect.

I didnt say anyone was mildly autistic. What I am saying us that there are people who are severely impacted (thinking strictly about what is autism not anxiety because of autism) all the time. Always have been and always will be.

My son has son learning needs (as assessed and discussed by an ep/cp) but it is his autism which is his greatest barrier. Like your son he has sensory needs but it isn't his anxiety that is debilitating.

The core of what autism is still autism with or without anxiety. Anxiety us in addition to, it can be had severely by people who don't have autism as well as those that do.

Just to add when he was assessed recently it was made cleat that my my son doesn't have learning disability.