ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Exactly.

ds is sadly an expert masker. Today after a particulary tough two weeks his mask has fallen off to the point where he can’t even get out of bed let alone contemplate going to school.

Okay but if you are capable of masking (not saying that doesn't have its difficulties) then your needs simply are not as profound as someone who can't be on their own because they will lash out at members of the public... For their entire life.

I keep seeing "self diagnosis is valid". But you wouldn't go around self diagnosing yourself with cancer, epilepsy, etc.

I know it's not always easy to get a diagnosis and the waiting lists for Autism.

I did used to know someone who self diagnosed himself with Autism. He clearly had no idea what it was!

I don’t think recognising that profound autism is something different means that everyone thinks that others without profound autism have it easy. I’m not sure why it is often treated as if it does.

There is a difference between being able to access the world independently, walk down the street alone, get married, work etc (albeit there may be some major challenges in all of that) vs those who require 24 hour 2:1 support. Recognising the difference doesn’t diminish the needs of others.

I agree OP. I work in an industry where many people have autism and while of course they struggle, they hold down good, well paying jobs. That is miles apart from severely affected people who will need a lifetime of care.
I also agree with @Stressedmum2017 that the hijacking of terms isn’t unique to autism and can be seen in bipolar and even dyslexia sufferers.

I do think you are being reasonable, my daughter was diagnosed at two and attends a special school , but she needs less care than many children there . I really feel that very severe autism is forgotten about .

And the other thing is it’s not a race to the bottom. I don’t see how trying to downplay the struggles of others does anything to help you.

ds will never live independently. He is always going to have high levels of support needs. But that doesn’t mean I can or should try to downplay the struggles of others simply because their needs are different.

I think the issue is the difference isn’t recognised.

It’s actually much easier in adults. Those with non severe/profound autism (not using levels as they seem problematic) come under autism services (if there are any) which tend to sit in mental health teams. Those with severe/profound autism access support via learning disability services.

I agree, there are definitely different levels of autism. I know high functioning and low functioning terms are shot down but it's true.

They no longer use the triad of impairment to diagnose in my trust so I suspect others may be the same.

YANBU OP and the levels previously posted aren’t massively helpful either as some will still not “fit” into one of the levels.

And mental health teams won't do anything because it's not a mental health issue. I went to social services after my diagnosis and was seen by their mental health team. They refused to work with me because a hatred of noise (to the extent where it's painful. I also have a mild hearing impairment so can't hear when it's too loud) and needing more than 30 minutes notice made me "awkward".

Many years ago someone asked me 'how autistic is he?' when I mentioned my DS new diagnosis, and I responded 'it depends what you are asking him to do' and I stand by that to this very day. It's the same as someone touched on upthread about levels, he could be all 3 levels in a day. He is what everyone in here would regard a 'success' as after being so difficult and not engaging through primary school at all he is now at university (lives at home) - what people don't see is the support is still required. They don't just go to uni and all is fine.

I'm a late diagnosed adult and on the outside I am managing. I am married 20+ years, 3 DC, worked for many years etc. The reality is the missing information and support meant I grew up traumatised from masking in primary school, punishes for not coping in high school and as a young adult had no idea how to function socially, relied on alcohol (which became a dependency, I have now kicked) and was extremely vulnerable - I need 2 hands to count the sexual assault/abuse/rapes that for the most part I thought were good relationships. I had a breakdown in my early 40s and eventually was diagnosed where everything fell into place.

My DD sailed though primary, I had to take her out of high school and she is selective mute which didn't even start until she was 12.

I understand we are all very different, but I don't understand which 'box' we would be placed in?

If it was done in early childhood my 2 diagnosed DC would have been boxed incorrectly, because they have changed, autistic people change as much as any other person as they grow and develop and make their way though life.

Off the top of my head, I think that the DSM-5TR (latest version of the diagnostic manual used by most health professionals for mental disorders) did introduce a severity element to the diagnosis so people can now be officially diagnosed with ‘severe autism’ for example. Not much help to you but it shows that your thinking has been validated by the medical world and a solution is being worked on.

I totally agree when someone has a learning disability they are classed in three different levels. Mild General learning disability, moderate learning disability and severe learning disability. The mgld is by no means mild and causes the person many difficulties and struggles throughout their lives but compared to someone with severe learning disability it is 'mild'. I think classing the different levels of disability helps the person get the right support for them( when the can get the support).

"Okay but if you are capable of masking (not saying that doesn't have its difficulties) then your needs simply are not as profound as someone who can't be on their own because they will lash out at members of the public... For their entire life."

My son would be in the category of profoundly autistic if there was one but does mask in the sense that he holds it in and is likely to explode in places where he feels safer and is almost certain to go for trusted people. It can't be guaranteed he will do this so he needs 3:1when out.

YANBU. I think after more research, genetic testing etc we’ll discover that what is currently lumped in altogether as ‘autism’ is actually several distinct conditions.

It would be much better for the individual to have a separate diagnosis that accurately reflects their own particular condition.

But then what’s the point of the word ‘autism’ if it covers a spectrum so wide that 2 people with the same diagnosis can have hardly any traits/symptoms in common? It does feel like autism is simply becoming a catch-all phrase for ‘anyone not extremely and classically NT’.

People have always been like this. Self diagnosis of all
kinds of things. Minimising people with genuine diagnosed health issues or disabilities.

The number of people with genuine, life threatening allergies being treated as if they are making it up to be deliberately difficult or fussy. People have died from eating food or being exposed to food or substances with an allergen because someone didn’t take their allergy seriously and lied to them or deliberately exposed them to the allergen.

Some people still believe that asthma isn’t real and the person having an asthma attack should just calm down and breathe properly.

What about people suffering debilitating depression. If you’re sad why don’t you just look on the bright side of life.

The list goes on. Education can make a difference, having precise categories or easy to understand labels may or may not help. However, there will always be people who can’t be reasoned with who will believe whatever they want to believe. There will always be people spreading misinformation or any old crap they make up.

But then what’s the point of the word ‘autism’ if it covers a spectrum so wide that 2 people with the same diagnosis can have hardly any traits/symptoms in common?

The word refers to the diagnostic criteria, not traits. I think this is where people get confused. Every single diagnosed person has to meet the same criteria which is concerning deficit/impairment and has little to do with traits.

Completely agree. It used to be differentiated somewhat by 'Aspergers' vs 'Autism'. While I agree that the spectrum is wide and individuals vary vastly, I think the assumption of someone with ASD now is someone high functioning and people have no idea that there are those who are completely non verbal and could never be able to work, for example.

Absolutely!

I agree there is a massive gap. My (‘if there are any’ in my comment summarises a very large gap). A lot of autistic people need the creative thinking that learning disability services are often very good at providing - but if they can’t get past the (strict) gatekeeping then no chance.

Autism services really need to adapt to be as creative & flexible as LD services. LD services aren’t right for many who need autism services - but their approach is often needed.

I suspect that a large number of the self-diagnosed activists have personality disorders rather than autism and that is why they find life difficult.

I agree, my dd is 16yo and was told she was borderline autistic, she has sensory processing difficulties, issues with her mental health, executive functioning issues etc however she is at college, has a PT job and friends. Yes she has difficulties but there is no comparison to someone who needs 24 hour care.

Would the term learning disability be used alongside autism when someone is non verbal, in nappies and needing significant support?

The S stands for spectrum. As in there is a varying range of symptoms and how people are affected by them. It is literally in the name.