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.

Most people would and do understand what I mean when I describe my don as having severe, profound autism orclassicsl autism. It has been known to prompt questions about access requirements and is helpful in deciding if somewhere is a suitable environment if I call for information before hand. I find some places offer more information on noise levels etc.

If I said autism they wouldn't have any idea of what I was talking about. I have also found that people are scared of asking for more information even if it's relevant for fear of insulting me or causing offence and other times they do use references and Language which isn't appropriate so having something formally recognising his needs is helpful.

In regards to people throwing about ref to theory of mind and rigidity of thinking, I'm conscious that as we're having this discussion some people taking part may have those struggles dud to their dx as they can play a huge part I'm some dx.

I agree and see the need for these questions. We have to be Ble to define people and group them to move research forward and hopefully put better support in place. Information is vital to making improvements.

If you don’t want any conclusions drawn from saying you are autistic why share it at all? I think language is vital. I just don’t understand why you would want a diagnosis to mean nothing to anyone? I’m baffled.

How do you know? Are you a clinical psychologist or a paediatric specialist?

No, autism isn’t a mental health disorder.
Yes, autism is highly correlated with mental health struggles.

spending all day around NT people is exhausting. Being in a classroom is exhausting. Being in an office full of people is exhausting. The world is built for NT people and many of us manage to navigate it quite well, but it takes an enormous amount of energy. Anxiety and ‘high functioning’ autism often go hand-in-hand. Honestly, the anxiety is the only real problem I have and it’s the only thing I worry about with my daughter.

Of course I'm not denying that autism and learning disabilities are linked. What I'm saying is that if I had a stroke and this had a significant impact on my cognitive ability, and another person had a stroke and it mildly affected their mobility and speech, one wouldn't argue that we had different strokes, or that the more mildly affected person didn't have a stroke at all..

I feel very mixed on this subject.

My DS has ADHD and ASD combined. His ADHD is very much the prevalent diagnosis. When people ask or I describe him to people, I often say he has ADHD and Aspergers. The reason I do this is because he really does not fit the autistic profile, as it is understand by the public or even professionals. He has great theory of mind, no obsessions, is very intelligent, no strict adherence to routine, no meltdowns, doesn't struggle with transitions. I've noticed that when I describe him as being diagnosed with ASD, people make assumptions about him and what his behaviour must be like. Not just friends and family, but professionals too. They seem to 'get' him more if I describe him as having Aspergers. After DS got his ASD diagnosis, his school started attributing autistic traits to him that he didn't have. For example, one time he was upset about something that had happened in the playground, instead of investigating why he was upset, they said it 'must be because he was struggling as mufti-day was coming up which was out of routine'. To reiterate, my DS has no problems with routine whatsoever, I could tell him we were hopping on a plane tomorrow to go to Timbuktu and he'd be excited and happy as anything. I told the school he didn't have an issue with routines, and they nodded and changed what it said in his notes. It was very obvious they were simply looking for 'Autistic traits' after my DS's diagnosis and didn't really know DS. It was at this point I thought the ASD diagnosis is somewhat problematic for my DS.

As an aside, having gone through the diagnostic process with my DS, I do feel as though I could get a diagnosis of autism, if I wanted to. It's not a physical illness where a blood test can determine whether it's 'yes' or 'no'. It's based on traits, information and the subjectivity of the psychologist (whilst yes, adhering to guidelines in the DSM-5). There are people who get diagnosis of Autism which are later changed to ADHD, SPD and vice versa.

I do feel as though I could get a diagnosis of autism, if I wanted to.

How would you do that? Just pretend? Professionals know what they are looking for and if you were NT wouldn't it be difficult to maintain a 'fake' autistic presentation all the way through? Two people assessed me, one doing the assessment and another purely to observe me, my eye contact, movement and behaviours etc.
Many things that were picked up at my assessment I have no idea I do. Just behaviours that are my normal, but flagged up as unusual to the professionals assessing me. They managed to fill 52 pages for my report, so there must be evidence there.

@Pira do you mind saying what prompted the seeking if an ASC diagnosis of some form, if a lot of his behaviour doesn't fit with the difficulties 'we' have? I'm just interested not trying to catch you out.

@Punxsutawney I'm fairly confident that I have ADHD, and there are many overlaps between the two conditions. Lots of the things that DS answered which were 'Autistic' for example, using items literally without imagination in the ADOS test for example, I would have naturally done the same anyway. I'm sure I could answer presenting Autistic traits in the pre-questionnaire from childhood and adult life, as well as during the ADOS, if I really wanted to.

@OneFrenchEgg Sure. I had presented similarly as my DS, in terms of being very hyperactive and headstrong. I assumed he would grow out of it. I stopped being hyperactive when I hit puberty, and I now present as more ADD (though undiagnosed). It was school who mentioned they saw traits of ASD in DS. He got the diagnosis of ASD because of his social differences and his sensory seeking behaviour. I question whether his social differences and sensory seeking could be attributed to ADHD though, as he has very few to no autistic traits. DS doesn't relate to much of what is written about ASD online. Knowing what I know now, I would probably have just had the ADHD test for him, as that is where most of his differences and struggles lie (hyperactivity, impulsivity, needing instructions repeated). Possibly ASD in the future if it became more of an obstacle and I felt he needed targeted support. I also had to do all of this privately, it has cost thousands, because the waiting list for assessments are years.

If people with autism can mask to be nt surely nt people can do similar? As parents we do become informed and familiar with presentations, picking up on others traits etc we then talk to other families who may have autism running through the family.

Many with autism especially adults seek out a diagnosis, some go through multiple assessments until they get the dx. I truly believe I could say the right things and behave in a way that would get me a dx if I wanted (I categorically do not) and I don't believe I have autism.

Thanks @Pira it makes more sense you paid (prompted by school) - we paid to investigate a couple of issues when we weren't sure. The child I have that I didn't suspect had autism is the one that most relates to it; they presented in an almost stereotypical female way looking back, and I didn't pick up until it was too late to avoid a MH crisis.

Where on earth are you stats for that? You’ve just made that up in the same way you say you could fudge a diagnosis. How? You’ve still not said. It’s utter baloney. The NHS diagnosis process is gruelling and thorough. It costs ££ privately. There is no point or reason to going through the process several times, none.

I have a masker who didn’t want a diagnosis and went to all her assessment sessions and ADOS determined to no prove she wasn’t autistic. She still got a diagnosis. It is not possible to pull the wool over the eyes of a skilled diagnostician either way.

Autistic people who mask still do not appear NT (there may be a very few people who can, but they will be the significant minority).

So @Cuckoosheep you are actually attacking NT people who fool professionals into giving them a diagnosis of autism?

And if so, presumably you are sympathetic to those of us with genuine diagnoses, that weren’t chased, that took into account decades of medical notes revealing life long struggles and were diagnosed by extremely experienced qualified professionals?

or are you saying that there is no such thing as high functioning autism? All those of us with high functioning autism are actually just NT people with narcissistic traits (or some other mental disorder) who want to give themselves a special label?

And just out of interest, are there any other types of disabled people you enjoy winding up? I’ve got a physical disability too - kids at school loved making fun of me for that. Maybe you were one of them?

Why does it matter if you think the diagnostic process is watertight or not? It isn’t an attack it’s an opinion. Misdiagnosis isn’t unheard of. Of course there are fabricators for all sorts of reasons. Why is this news to anyone?!

Such a shame to reduce a really interesting conversation to a spat.

@Scautish that's a huge jump. I haven't said any such thing. I've said ofcouse people can get a dx of autism if they don't have it. People have. If they know what to say, how to present etc. Some people with a dx have had a "hard time" (not my wording, a previous posters wording) of getting a dx. Some people do chase a dx until they get one.

I have used the term high functioning but only because of the lack of other descriptors (as discussed earlier). I haven't said anything anywhere in this thread about narcissism.

In actual fact I was parry to conversation in real life where the issue of people needing to feel special and the lengths that theyll go towas discussed and yes autism came up. I'd not even considered that as I can't see anything positive about having a disability.

These things do need to be discussed, it isn't OK to silence people because it isn't validating your opinions.

I'm also not the only one on this thread thst has said they thought its possible for someone to get a dx if they dont have autism.

spending all day around NT people is exhausting. Being in a classroom is exhausting. Being in an office full of people is exhausting. The world is built for NT people and many of us manage to navigate it quite well, but it takes an enormous amount of energy. Anxiety and ‘high functioning’ autism often go hand-in-hand.
This. 100%.
And then you have (some) NT people complain about how hard it is being with someone with ASD. Try having ASD when literally almost everything is fucking exhausting. From brushing your hair, to getting on a bus, to having to go into a supermarket, even having to say hello, etc, etc. People with ASD have to find a way to adapt ALL the time for a world that’s built by and for NT people. Which is even harder when adapting to anything is the absolute antithesis of having ASD.
It’s why some of us with ASD coped better with lockdowns - because for once all the exhausting demands of ‘normal’ daily life were gone. Our world became ‘smaller’, and much, much, easier to navigate.

They would though. They would look at where the lesion was. They would diagnose different aphasias (which need different interventions and support). They would diagnose different types of mobility problems.

What would your ideal world be like then? (Genuine question) could you not adapt your current situation as much as possible to suit your needs? I appreciate some things you can't get away from but supermarket delivery/ amazon to avoid the shops, wfh if you can, don't go out socially?

I don't think my son masks, his autism is quite apparent all the time. There are aspects you find exhausting which he loves (hair brushing, supermarkets, engaging complete strangers, going on the bus). I find the differences really interesting.

Ok @Cuckoosheep , you are clearly looking to upset autistic people.

you have been asked several times to show how you’d fudge your way through a diagnosis (which requires extensive corroborating medical evidence btw - if it’s being done properly) but you’ve failed to do that.

you’ve stated over and over that “many people” do this (chase a diagnosis) - with no supporting evidence (because it’s anecdotal bullshit)

you have undermined autistic responses to you on this thread by throwing out “rigid thinking” and “theory of mind” suggesting that this renders us incapable of reasonable discussion whilst at the same time suggesting that as we can articulate our problems, it shows we don’t really have a problem - dismissing our disability. Complete contradiction

you have stated I’m trying to shutdown opposing views and that I’m bullying you! when your view is many diagnoses are fake, HF autistic people don’t really have much of a disability then yes I will push back wholeheartedly as this is just wrong. Of course you’re entitled to your opinion, but for you - a neurotypical person - to dismiss my own struggles due to my autism is absolutely unacceptable (can you imagine if I tried to dismiss your struggles as the parent of a profoundly autistic child - I would be deservedly shut down for doing so)

I’ll step back for my own MH. I’m recovering from a breakdown and this is not good for me but you are way, way out of line for trying to minimise, dismiss and silence HF autistic people.

Could we consider moving past the argument about getting a false diagnosis? I'm finding the thread really interesting, really useful to hear from people whose experiences I can't understand, and sharing mine. It sounds like a pointless conversation anyway - I imagine it's theoretically possible to feign the symptoms of something and get diagnosed across a range of conditions but so what?

Just to be clear I haven't dismissed or dismissed "hf" autism, I've said it's different and different dx distinguishing it from those with profound needs would be helpful. Ive gone further and said more language, better descriptors and more dx (especially with the genetic research) is a good thing for all. I truly believe the umbrella diagnosis fir do many different presentations/ conditions is helpful.

Even in my last post I described autism as a disability.

I haven't said many dx are fake, I've said misdiagnosis happens and I'm sure people can get a dx who know enough if they want one.

I did discuss rigidity of thinking and theory of mind as these are part of dx so do play a part in the discussion.

This thread is actually really interesting, having open discussions is helpful and helps to give insight. Different opinions shouldn't be dismissed but that includes mine too.

Should read as "I truly believe the umbrella diagnosis fir do many different presentations/ conditions ISN'T helpful".

I guess we’ve heard how the merging of diagnosis benefits aspergics, I wonder how people feel it has benefited autistics (old terminology)?
How has it benefitted those who were already called autistic?

I’m interested in why people want dx in the first place if they don’t want any preconceptions about their condition? I really genuinely don’t understand.