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.

@OneFrenchEgg can I be slippery and say it could be both co morbid or the bigger umbrella issue (autism) was missed.

Depending on whether you met the criteria for additional standalone diagnoses or whether a person did in fact get a diagnosis of bulimia because they were a sensory seeker who was failing socially and at the time nobody picked up on that aspect?

Or you had dyspraxia but nobody looked for autism in girls despite doing poorly in school and truanting.

I missed out two more fun ones - pp psychosis and adhd of course.

Hope that makes sense - rough week, possibly confided thoughts!

@OneFrenchEgg no I'm not saying that people in my family with those diagnoses did not merit them, and it was causally autism - I agree not all eating disorders are related to ASD just like not all bipolar is girls and women with autism who've not been picked up for autism.

I feel really sad for the previous generations who've gone through their lives with little self knowledge.

Is autism more prevalent are people just pushing for more diagnosis?

Depends on what you mean by autistic. More people meet the diagnostic criteria now than the diagnostic criteria in place of fifty years ago. But if you applied current day diagnostic criteria to fifty years ago, are there more now? I guess you can look at diagnostic rates in older people (>40) versus twenty-somethings to see if more younger people are autistic but there are likely to be too many confounding variables to make much sense of it.

Hi yes interesting and definitely have had experience of undiagnosed ASD leading to sensory issues leading to mental health breakdown in a family member. For me, I suspect comorbidity - more likely maybe due to my brain wiring but not a missed diagnosis. I had ocd treatment which reduced it hugely before the ASD diagnosis.

I think previously many people, especially women, slipped through the net and their struggles weren’t identified properly.

I have just started the process of perusing a possible autism diagnosis for me. When speaking to my Mum about it she has said given what is known know about autism and autism in girls she would have pushed 30 years ago when I was at school but at the time it wasn’t the done thing. Even then though things like my shocking social skills, poor communication and sensory issues were mentioned my school throughout but the three were never connected.

i think what is happening now is a catch up of some of those who have slipped through until now. It was being discussed on five live a few weeks back and the expert they had on pointed out that during covid many people lost their routine and their normal coping methods which highlighted their struggles more.

Honestly? I'm fairly confident I could get a diagnosis for her.

She's not autistic.

This comment makes no sense. Diagnosing clinicians are very thorough. How would you "get a diagnosis for her" if she isn't autistic? And how can you state categorically "she's not autistic" without her having an assessment, given her presenting some indicators that she may be, that it's typical for the difficulties to become more apparent to everyone else later in girls, and that there's a family history?

Depends on what you mean by autistic. More people meet the diagnostic criteria now than the diagnostic criteria in place of fifty years ago. But if you applied current day diagnostic criteria to fifty years ago, are there more now?

The diagnostic criteria have been adapted as medical understanding advanced because so many autistic people were being missed. Not least a huge number of women and girls because the original criteria were based solely on research on boys.

I have just started the process of perusing a possible autism diagnosis for me. When speaking to my Mum about it she has said given what is known know about autism and autism in girls she would have pushed 30 years ago when I was at school but at the time it wasn’t the done thing. Even then though things like my shocking social skills, poor communication and sensory issues were mentioned my school throughout but the three were never connected.

My mum says the same; she wishes she had known and pushed for help.

At least they show some understanding I guess. My parents still deny autism exists for people who can speak or make eye contact despite two of their children and two grandchildren having been diagnosed now.

Well yes, that was my point, diagnostic criteria change so numbers diagnosed now are not comparable to numbers diagnosed in the past. Not just in girls either.

Presumably all of those autistic people who were suffering with no understanding of their issues who now have a diagnosis is to be welcomed.

At one point we thought the entire universe consisted of our own solar system. Increased knowledge and understanding is to be welcomed.

Somebody didn't just wake up one day and decide to change the diagnostic criteria. The changes made were based on decades of scientific study and peer-reviewed research which showed that many, many autistic people were being missed, with horrific consequences for their lives.

If you want to conduct some similarly robust research of your own to prove that all of these medical professionals were wrong in their statistically tested conclusions and make a case for reverting to diagnostic criteria which meant that many autistic people would never understand the reasons for their disability or have any recognition or support then go ahead. We'll all be happy to read your study, I'm sure. Presumably it will also offer an alternative explanation for their disabilities which is not autism, since you are denying their diagnoses are correct.

Autism isn't over-diagnosed. There is no evidence for this. All of the evidence points to it having been under-diagnosed and hence the huge catch-up that is now having to be done for the adult population.

Yes my mum has embraced it as her special interest😂 I get bombarded with her research and interesting 'did you know?'

Yes @TheLostGiraffe if I had a pound for 'they say everyone is autistic now' or 'your sister says
I'm autistic hohoho'. Thankfully the penny is dropping a bit at last.

@OneFrenchEgg the co morbidities and treatment for them are critically important for the most effective treatment - agree.

I realised recently I've failed to connect with my mum for years because of her poor social skills and inability to say anything remotely comforting despite being a very caring person, I wish she could've known.

Such a study was actually done a few years ago. Brugha et al (including Simon Baron Cohen), 2011, interviewed and assessed a few thousand British people, randomly chosen except that they had to give consent. They included children, younger adults and older adults, and were assessed according to the then-current criteria for autistic spectrum disorder. About 1% met the criteria, and there was no difference between age groups, suggesting that there had been no actual increase over the years, and that apparent increases in autism were the result of increased awareness plus changes in diagnostic criteria. I.e. NOT due to diet, television, upbringing, etc. etc., and CERTAINLY not due to vaccines. Of course, things could have changed since 2011, but the biggest increases in diagnosis rates occurred in the 1990s.

I am missing your point? I am simply saying you can not compare prevalence reported 50 years ago to prevalence reported now as they are not like for like. I was not commenting on the reasons for the changed criteria, just that they have changed.

50 years ago most people with autism would have been locked away in an asylum. Thankfully we have moved on a bit since then!

It's a tricky one, I guess that is where the old term Aspergers is more helpful. I have a daughter with high functioning autism- socially she is chatty, you wouldn't think there was a problem. But she is completely incontinent, has a stoma, sleep disorder, stims, behaviour probs and epilepsy. All put down to her autism. High functioning autism away from the public eye can be misleading, for us anyhow.

I don't think a different diagnosis a d definitely not Asperger's with all its connotations and history but a differentiating one maybe. Some extra letters 😂

Why,we all get differentiated reports.

True! Another term needs to be created.

I do smile sweetly when I hear other parents say I think my child has autism after they've met my daughter- because she seems so neurotypical on first appearances. But then like I've just said I don't know that child...

I am missing your point? I am simply saying you can not compare prevalence reported 50 years ago to prevalence reported now as they are not like for like. I was not commenting on the reasons for the changed criteria, just that they have changed.

Perhaps "it depends what you mean by autistic" was very poor phrasing then, if you do understand this point. Because the people being diagnosed now are autistic. Previously the issue was huge under-diagnosis hence the critera being updated as medical knowledge and research improved, so that people who should be captured in the criteria are captured. The "prevalence" has not increased. The accuracy of diagnosis has. Obviously leading to more diagnoses, because so many used to be missed. There has never been evidence of any widespread erroneous or overdiagnosis, ever. All that has happened is that the autistic people who ised to suffer in silence are now recognised.

DS has a diagnosis of Aspergers, I think it's absolutely ridiculous they now lump everyone in together as it does no one any favours. But you know, they did it in America so why would we question it.

I'm always amazed at how people rush to say how hard life with high functioning autism is, as justification for lumping everyone in together - and yes compared to how life is for someone that is NT it is - but really to me there's no comparison between the challenges someone high functioning faces and the challenges that someone with classic autism faces (not to mention the challenges faced by their parents).

High functioning doesn't mean you don't have any issues - even if people misinterpret it in that way - but the challenges faced by children with classic autism (and their parents) are always likely to be far greater.

Exactly. There is differentiation. What some people seem to be objecting to is autistic people not giving every detail of how their condition affects them to every single stranger or acquaintance they meet. Perhaps we should all carry the reports around with us to present to strangers on demand so that they can "differentiate" exactly what struggles we each have.

Or, they could mind their own business.

Have you read temple grandin's wiki entry? Her parents were told she was brain damaged and should be put in an institution - her mum refused and persevered against that advice for years.
The 'the girl who thought in pictures' is a lovely book.

@TheLostGiraffe Utterly bizarre that all of these people appear to believe they are more knowledgeable than clinicians and academics who have spent a lifetime researching and training in autism. Or that people can just "get" a diagnosis without a really thorough assessment.
I don’t think that’s bizarre at all. 20 years ago we were still in the shadow of the “refrigerator mother” idea, forced holding and forced eye contact weren’t unusual, ABA programs of basically dog training children into normal weren’t unheard of and for 40+ hours a week for preschoolers, electric shock packs were used in schools in the US (and may still be), chelation had and was used, silly fucker Dr decided to invent a vaccine/autism link the aftermath of which must be countless death/damage from preventable disease…. Drs are not infallible and often have a tiny exposure to asd even if they are “experts”.

As for the ease of diagnosis, I personally think I could fudge my way through having had the experience I do. I don’t imagine I would and can’t see where the benefit would be but I think it’s doable.