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?

The thing about dystrophic features is they are often very subtle .. I see NT children with epicanthal folds or a wide flat nose but it's not always a sign of a genetic condition... my son has them but also looks like my dad who was NT .. it's a very fine line often

Just Google autism wheel and you'll get loads.

Yanbu, that’s why the Asperger’s diagnosis was helpful when it was a separate thing back the in the day

I think that it’s really important that people understand that there are autistic people who are non verbal, or minimally verbal and need 24 hour care who have normal or extraordinary IQs because their difficulties are caused by their autism. Yes there are people who are both autistic and learning disabled or deaf or blind or have other conditions like Downs Syndrome, but it’s not all autistic people who aren’t able to live independently.

It's that specific one I'm interested in as I have struggled to find any information about those particular traits and what support to give an autistic person with some of them

Thank you to everyone who has replied, it’s been really interesting to get different viewpoints. Everyone’s opinions are valid and I know it is so different for each individual. I’d like to say, I never intended to minimise anybody’s issues at all or come across as ‘my kid has it harder than yours’ (although I did find it hurtful when one poster suggested that as my child has no demands put on him he is somehow unaffected but anxiety or stress). It was more to do with, if someone asks about my son, for example, we are going to meet them for the first time (or I’m phoning somewhere to check the environment is suitable) and I say he has autism I usually have to follow it up with ‘he’s quite severe, non verbal..’ etc as I find most people assume ‘higher functioning’ children with sensory/anxiety issues when the word is used.

Also get irrationally irritated (my problem I know as I’m aware it comes from a good place) that they know all about autism as they’ve watched the A word, which is so extremely different from my sons issues. Also the suggestions that have I heard cutting out gluten can cure him or if I’d given him cranial osteopathy as a baby he wouldn’t have the problems he has now!

🤣. I find the “have you tried XXXXX” hysterically funny. My child doesn’t need fixing in that way

The thing is ASD is a neurological condition, things like incontinence, learning difficulties, non verbal are all things that are a part of being autistic but all separate issues. Each autistic person is unique with a individual experience of being autistic and the impact that has varies massively. To start deciding some people are more autistic than others would be problematic as firstly it would inevitably impact on support/funding in a negative way. Also being told you are more or less of the person you are would potentially be psychologically damaging,

Both my sister and I are late diagnosed, I am extremely uncomfortable that we share the same diagnosis as my cousin, who is non verbal, very low IQ and requires 24 hour care. I feel it minimises her struggles.

You often find autism activists citing people who are similar to my cousin but have high IQs, stating this is why we must not have separate diagnosis's as if this is common occurance. However, I have yet to meet an autistic person that would meet this criteria (and I have spent many years working for an autism charity).

My son has a normal IQ and severe autism (in a special school) but no way does he have the difficulties that my cousin has

@iminvestednow 💐Well meaning ignorant people are difficult to tolerate.

I refuse to watch shows like the A word because I think all they do is enforce a stereotype. I wish people would separate fiction from reality.

I get where you are coming from. Do you think it would help to say profoundly autistic?

I promise you I’m not trying to be difficult or provoking (like I said everyone’s opinion is valid and mine is not more important or right than yours which is why it’s been so worthwhile staring this thread. It’s certainly given me a lot to think about and a little ashamed I didn’t realise how much people go through behind closed doors as they are able to mask) but I’m not sure I understand what you mean by more or less of a person? Recognising some people have more needs than others doesn’t in anyway detract from the person you are or the struggles you have. This is also going to be controversial but I think we need to recognise (I won’t use the phrase some people are more autistic than others) that some are profoundly more impacted and have a ‘worse’ neurological condition than others. Someone who requires constant care and supervision is surely more impacted by their condition than someone who needs to be helped and supported in other ways. In no way do I think that because my child needs more help you shouldn’t get all the help and support you need too.

Usually said by someone who has absolutely zero clue or experience with neurodivergence.

I get that you want to differentiate between the level of care needs. That you want it to be a bit easier when checking if an environment is appropriate or meeting a person for the first time that they have appropriate expectations. I’m not sure one way or the other if having a separate name would accomplish that.

The reality is that people will usually have their own perception based on their own experiences. So, there will always be a need for effective communication.

You say that you will add that he is quite severe, non verbal, because of people’s assumptions of high functioning autism.

Clarification and additional information is just part of effective communication and I don’t think it will change much.

In whoch case, why try to split us all into "levels" that don't represent the spectrum in which impacts actually manifest?

I’ve clearly killed this thread! I would like to ask a few questions of some of the posters. Honestly interested and not trying to ‘score points’.This isn’t sarcastic or diminishing your issues in any way. I struggle to understand how you think you are experiencing similar levels of difficulty with life, more so in some posters cases as those with diminished capacity are clearly unaffected by anxiety or stress (ok that bit was facetious). You are capable of forming relationships and having a family, capable of articulating yourself in a clear a concise way in an online forum, even posting diagrams, yet equate yourself with those who are not in anyway capable of that and without family support would find themselves institutionalised.

It would also be hard to classify autism into grades sometimes as their presentation can fluctuate through life. My son is mild ASD. Really quite mild, but noticeable.

My younger brother, however, was severe when we were growing up. Constant meltdowns, delayed speech, he was in nappy pants until he was 11.. however he is now a 30 year old and in university and living independently (though still noticeably autistic). I think my brother would have been re-classified a hundred times over as he grew.

Yanbu.
I have Dyspraxia. I can generally manage very well, and the main effect for me is I'll never drive, but I've known that for years so I live near a good bus route- very manageable.
I know people with the same condition who are much more severely affected, and it changes how they live their lives in more major ways. I know it's not the same as ASD but what I'm saying is I completely understand that one diagnosis doesn't mean the same thing for everyone and the differences in need for support can be massive.

Agree. When people say 'autism is autism', it's a bit like saying 'blind is blind', when there's a huge spectrum, from shortsighted through to completely lacking vision.

It's also so typical of a more privileged group, to come in and get outraged at any suggestion that their actions are creating harm for a less privileged group.

I agree that people’s needs are different. My child has what would have previously been called aspergers. I understand the name (Nazi link I believe) is problematic but I think the condition (along with the different profile) is still a helpful valid one. I don’t understand why they didn’t rename it.

To start deciding some people are more autistic than others would be problematic as firstly it would inevitably impact on support/funding in a negative way. classifying everyone as universally “autistic” has had a catastrophic impact on funding and support for the less able. We’ve helped autistic children with a Lego club or girls social group is a marvellously cheap way of looking like you are doing something while quietly sidelining the silent majority.

@walnutmarzipan Usually said by someone who has absolutely zero clue or experience with neurodivergence. no. I don’t need to go gluten free or have some charlatan lay hands on my son thanks.

Agreed. As an autistic person I found terms like high functioning and Aspergers really helpful in having conversations with employers who didn't really know much about autism.

Other conditions like cerebral palsy, or deafness are described as mild or severe/ ascribed levels and I find it frustrating that autism is somehow different.

I didn't see anybody saying that all autistic people experience similar difficulties in life. Quite the opposite. I think you must have misunderstood the posts. People are saying that the difficulties - because they are split over various different capacities per the spectrum diagrams people posted to demonstrate - are impossible to stratify into a "level" format without grossly misrepresenting many people's situation and leaving many people without any "level" that fits their situation. This is not at all anybody trying to imply that all autistic people are equally impacted, it is the opposite: people have tried to explain the complexity of the different ways they are impacted and that this can't be expressed accurately in levels.

Sometimes I do wonder whether NT people have their own significant deficiencies in communication given that even the most precise words are repeatedly misinterpreted, it's happened so many times on this thread. Unless it's deliberate of course.

Who benefits from not being able to describe the level of impact? Who has benefited from the merging of the two diagnosis? Who benefits and who loses?