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.

which requires extensive corroborating medical evidence

I don’t know anyone with an autism diagnosis who required medical evidence to get it. In every case it was psychiatric evidence. I have also not heard of any biomarkers for autism. What medical evidence are you referring to?

Psychiatric evidence is medical evidence. Psychiatrists don't spend five years at medical school and two years working in different areas of medicine just to go and not do medical work

I think they use a clinical psychologist usually not a psychiatrist?

But no one would argue that they didn't have a stroke, only that the treatment and intervention required is different.

@Shelefttheweb was claiming that psychiatric evidence is not medical evidence. That's incorrect whoever's doing the assessment. Psychiatry is a field of medicine, so psychiatric evidence is medical evidence.

Incidentally my NHS ASD diagnosis is from a neurodevelopmental psychiatrist, so it does happen.

I think she meant that it wasn’t physical and so the assessment was by talking and questioning.

The PP was trying to correct someone else who stated that medical evidence was used in diagnosis, saying it wasn't medical evidence, it was psychiatric evidence.

That's like someone saying a guy was wearing a red shirt, and someone else correcting them by saying it wasn't red, it was scarlet.

Discussions and debates easily get unnecessarily complicated by an unacknowledged difference in what we're using words to mean — if one person is disqualifying psychiatric evidence from the category of medical evidence while others include it, we'll end up talking at cross-purposes.

Yup that’s exactly why I explained what I thought the poster meant.

I don’t really see the point in this discussion of how robust the diagnostic process is. It’s obvious that some posters think it’s not that full proof and some don’t. Repeating your opinion doesn’t make people change theirs. Taking offence at someone’s opinion doesn’t really change it though you may bully them into silence I suppose but how does that help. What has it to do with the impact of the merging of diagnosis?

Being DSMV Critical (!) doesn’t mean you don’t recognise the difficulties of people who would not have fit previous diagnostic criteria. It means you don’t think it has benefited autistic people or their families to broaden the diagnosis.

It was fairly clear what the poster meant. She thought she had a gotcha, not understanding that psychiatry is medicine.

The rest of it, meh, I'm not too interested in the whole "can/do people successfully fake autism to get a diagnosis" thing. But I do care about mutual understanding of what we mean by the terminology we use when we discuss this stuff, without which conversations can't be productive, and I care when psychiatry gets downgraded in the public perception to not being a proper field of medicine, because that affects me as a psychiatric patient.

It’s not as concrete and has a fairly unsettling history surrounding autism. I absolutely think we should question its rigour and highlight its mistakes. I don’t thin the pp was trying for a gotcha at all, I think she was pointing out that without concrete testing that doesn’t involve opinion it was easier to bend outcomes.

I’m not sure why any of this needs to be so personal. The discussion is between people with fairly serious disability in their families or themselves. Is it so hard to tone down the upset?

That isn’t what masking means. There are people able to hold down jobs and families who don’t mask. There are people who mask who cannot work or manage to live independently. All that masking means is that you are able to mimic neurotypical behaviours/create social stories to help in public settings. I’ve known nonverbal autistics who can mask by not stimming or suppressing the need to obsess over things until in private.
you fundamentally don’t understand masking if you think that is what allows some of us to work.

It seems like so many people want their child diagnosed as autistic when any difficult behavior presents itself. It’s being used as as an excuse for poor parenting. Children with debilitating symptoms should have a different classification.

Who's upset? I simply pointed out that the poster "correcting" someone else incorrectly was incorrect. It's nothing to do with things getting personal or whether psychiatry or diagnostic criteria are rigorous or any of the rest of it. It's simply wrong to say "I don’t know anyone with an autism diagnosis who required medical evidence to get it. In every case it was psychiatric evidence" — because psychiatric evidence is medical evidence. Regardless of whether psychiatric evidence is easier to "bend" than other types of medical evidence, it's still medical evidence.

That's literally all I'm pointing out. Psychiatry is medicine. Psychiatric evidence is medical evidence. If you want to catch out someone who says medical evidence is always needed, the way to do it is really not to state that all the cases you've seen have had (a particular subtype of) medical evidence.

Scautish
Your post was spot on.

So again where are the links for evidence that adults continuously go through the process until they get a diagnosis,that people are false diagnosed and it is easy to fudge an NHS assessment? Where? My daughter and I had completely different experiences of our ADOS. She found it easy, I found it hard. We both answered things differently. We both present differently in many ways. We both got a diagnosis. There is no formula to get a diagnosis because there are so many variables.

And I’d like to point out that a fixed mindset is stereotyping. It never came up in my diagnosis at all.

Still also not had a list of services we are taking from autistic people with learning disabilities. Pony riding holidays were mentioned.🤔That would be both my daughter’s and my idea of hell. I’m also far too busy trying to keep her alive and battling for services to facilitate to even think about holidays.

There is some utter goady shite being posted on this thread and I’m staggered MN lets the thread stand. They wouldn’t permit it with any other disability.

And as for saying people want a diagnosis to excuse poor behaviour in their children.😡

Desertbarncat exactly why things need to stay as they are. My child has debilitating symptoms meriting countless hospital stays, bring stuck at home and a destroyed education for the past few years. She doesn’t have a learning disability just difficulties ,where would she fit in?

What a disgraceful thing to say.

FWIW, my DD is extremely well-behaved. She's polite and well-mannered. Has never hurt another child - or adult, come to that. She works hard and contributes well at school. Follows every rule. Every teacher she's ever had has said "I love teaching your daughter" to me at some point - including the one who was teaching her when I started the diagnostic process, who told me if I hadn't come to her she'd have come to me, because DD was so clearly autistic.

Not badly behaved. Autistic.

@Ca1mingC1arySag3 I also mentioned ring fenced professional input, ring fenced services where funding does require a dx and research.

Again more people with different presentation in a dx changes how services are structured and what they provide so yes this does effect my son. More people using services which hasn't increased proportionally does effect services.

Add to that the "nothing for/ to us, without us" etc and services are shaped based on what the most communicative and vocal want. Given that we are discussing whether those with the most severe needs would require a separate dx (read the original post) serviced and research is impacted.

I never included learning disabilities or difficulties, you did.

Have a Google of rigidity of thinking and theory of mind. Rigidity of thinking comes up in the triad of impairments.

As for goady this thread has been really interesting but keeps getting sidetracked by you wanting to have it out with me. Why is it so difficult for you to accept that I have a different opinion to you?

If you are interested in taking part can you tell us why your so against the diagnosis being split and how people who would be classed as severe having a separate dx or a formal descriptor like profound or severe impacts on children like your daughter?

Because you keep making damaging accusations that you have given no evidence for.

Re ring fencing- what services?

Re fixed mindset-

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Very different to your stereotyping and dismissal of those with autism as having a fixed mindset.

Desertbarncat it's obvious you have name changed to be a goady fucker and disrupt the discussion. Do go away child.

For the discussion by other posters about why if the dx can be faked was relevant. I took it as if there were more people who were presenting to as closer to nt or even nt if faked it changes what the dx means. Where once you had a group of people sho were classical with a dx of autism and people understood what that means now the dx is given to so many with differing needs/ presentation. I'd linked an article that said within 10years the dx would be meaningless due to the closeness in presentation to nt of the majority of people with a dx.

I am getting tired of repeating my same points over and over and I apologise to those wanting the discussion to move on for defending my stance. I don't want to be forced into silence because my opinion is different. I'm finding the discussion/ thread (not the having to defend my opinions part) really interesting.

@Ca1mingC1arySag3

Rigid thinking in the autistic reduces the desire to ask for additional viewpoints or consider the experiences of others as relevant to ways of thinking about a topic. Repeating daily routines can be another expression of inflexibility.

Theory of mind, the cognitive capacity to infer others' mental states, is crucial for the development of social communication. The impairment of theory of mind may relate to autism spectrum disorder (ASD), which is characterised by profound difficulties in social interaction and communication.

past tense: ring-fenced; past participle: ring-fenced
1.
enclose (a piece of land) with a ring fence.
2.
BRITISH
guarantee that (funds allocated for a particular purpose) will not be spent on anything else.
"the government failed to ring-fence the money provided to schools"

Yes some services and access to some proffesionals is dependent on a dx.

But that’s what a lot of people on this thread are saying. Not that they don’t have autism - just that autism as a diagnostic marker is pretty useless because it is covering so many different conditions (autisms) and is so broad it can be pretty useless.

Example from own life: I would never attend anything open to everyone that described itself as autism friendly. I know it will be completely inaccessible to ds1 & that the organisers have probably no idea that someone like ds1 exists. The diagnosis is utterly useless for him in the general world (in fact it can hinder access because people have an image of someone with far more understanding of language than he has). I never really use it. So for example if the GP says they want to see him I don’t say he can’t wait because it will be too difficult for him because he’s autistic I just tell them it will be too dangerous for him and others.

However, within learning disability services it is more useful. Largely because it indicates that there will likely he access issues over & above what is typical for learning disabilities & a very individual approach is going to be needed. Much as I hate the the word it highlights ‘complexity’ & the need for skilled people. And that team know what autism can look like in that particular cohort or subgroup so it has some meaning.

You might say to your friend ‘so & so has had a stroke’ but the clinicians will not be describing it in that way - particularly when considering service provision - as it’s a pretty meaningless term in itself.

I’m hoping in ds1’s case to get a genetic diagnosis as it will be far more use. I want to know which meds others with genetic type have found useful as that could be a positive change for him. I’m interested in types of seizures they have because he cannot access an EEG so unless he’s having a tonic clonic it’s hard to
work out what is going on. I’m interested in what communication systems others are using. That sort of thing. Can’t get any of that from autism.

So how HAS the broadening of the criteria helped those who were previously described as autistic?

Has it increased provision?

Has it accelerated research?

Has it helped with inclusion?

Stuff like desertbarncat 'contributions' can just be ignored surely - I'm not going to reply on what is an otherwise interesting although difficult thread to daft shite like that.

I tried to read the whole thread, but apologies if I missed this. I have a DD with ASD diagnosis. It is currently considered 'moderate' and she has an extremely high IQ so I assume would be 'high functioning' as far this thread is concerned.

But as she gets older she becomes more and more autistic (can't think of a better description). So at the age of 10 she can no longer access mainstream school. Her world is very small and getting smaller. Is that normal? I am reading here about people who sit in one camp or the other, but is it possible that people move along the spectrum as they age? Or is it just that masking NT behaviour becomes increasingly complicated?