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?

I agree OP.

I think not differentiating between levels of difficulty experienced (at least roughly) helps no one. It makes it hard to talk about them.

I found the Asperger's / high / low functioning labels useful from the communication point of view. Now there's nothing in their place and it's hard to understand someone's situation.

YANBU
You can have an Autism diagnosis and be totally non verbal, in nappies etc....and at the other end, you can be in a good job and coping well.
The spectrum is massive.
I see people on the "less affected end" say autism is a gift or superpower. They just don't seem to get how others on the same spectrum can be affected.

The word spectrum in asd covers all though. Mild to severe. One Person with autism/asd is just that…one person. It’s not The same for everyone so it’s easier to call it a spectrum.

Autism is very individual even among people who need 24-7 support. For example there might be someone nonverbal who can cook and clean for themselves but deemed not to have capacity or someone incredibly articulate with capacity, whose PDA and anxiety makes engagement deeply difficult.

My little girl was diagnosed medium level 2 ASD five years ago. Her specialist school think she's more high level 3 now. I think so to now, she was diagnosed at 3 which was incredibly lucky for us all to get such an early diagnosis but now she's 8 her needs and abilities seem to point to a higher level. The easiest way to explain it to people is that with Autism there are three different levels, basically low, medium and high. Different names for ASD would probably just confuse more people. Stick to the levels, I think it's easier. I hope your son gets all the help and support he needs and that goes for you to. ☺️

No I think that the idea that loads of people appropriate a diagnosis and then those that fit the core original diagnosis meekly shuffle off and find a new diagnosis is outrageous. We would lose all the years of research, all the history, all the charities set up and funding.

That is incredibly helpful, thank you so much. I know it’s a massive spectrum but like you say there seems to be this one term which could mean -slightly socially awkward or incontinent non verbal with a complete reliance on care.

Perhaps the old terms Kanners and Asbergers served a purpose? I don't know.

The "levels" in the previous post do look very helpful, but I have to say I have never seen anyone actually referring to these, so I guess they are not well known in the general population.

@Elfnotonashelf thank you for posting this, it is very helpful.

I agree with you. I think it is easier now that it is divided into 3 levels.

autism is an umbrella term for a triad of impairments. The term spectrum relates to the three elements shown in the diagram (see Psychology U.K. visual). Just as people are very individual, autism presents differently in individuals.

I think the following may be helpful to understand why Autism is a spectrum disorder and has such a broad diagnostic criteria.

‘Autism is highly variable – the word ‘spectrum’ refers to how autism is experienced differently by different people. Autism is considered a spectrum because it’s different for every autistic person – some autistic people might need more support than others to live the lives they want to lead. The way autism affects you can change as you grow and develop, and experience different environments.’

www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/autism-spectrum-disorder-asd

I dared to use the term 'mild' in the ND section on MN once. Got torn a new one by people saying that there's no such thing as mild.

Diagram here

I agree. My son is 7 completely non verbal in nappies and will never be able to live unaided. My niece is 14 and is perhaps the most intelligent child I've met but struggles socially. Yet it's the same diagnosis

Some individuals can be completely reliant on care whilst being academically bright, having capacity and good hygiene. See the triad of impairments and comorbid diagnosis

It's a tough one and some people can be so insulted by words like 'severe' or 'mild'.

The thing is, someone could be 'severely' affected by autism in their social and emotional communication but their learning ability could be just within the expected range for their age so only 'mildly' affected by autism.

Then someone else could be highly sociable and well aware of theirs and others feelings, but struggle to verbalise and have difficulties keeping up with their peers in their learning.

And someone else could be incontinent/unable to use the toilet independently, have intense sensory difficulties, be unable to talk, unable to access the curriculum, unable to socialise etc.....

How do you determine whether someone is 'mild' or 'severely' autistic when there are so many effects of autism that each affect each person differently.

It's far more sensible to have Autism as the main diagnosis then branches off that to identify how it affects an individual and organise appropriate support for their unique situation.

My daughter is autistic. What is called 'high functioning' I suppose. Probably would have been diagnosed as having 'Aspergers' if she was a decade older.
She goes to school that specialises for children with autism. The children are on many different levels.
Some a generation ago would have probably been labelled as 'mentally disabled' or a generation before that probably 'mentally r-word'.
People hear "autism" and don't always realise it includes people who are never ever going to be able to live independently.

I agree also with the op..but when you say there are other people who say they were diagnosed at 40 and have a good job and coping well, this is incorrect. Yes, they might have a good job but they are not coping well..hence the diagnosis at 40, why they went for assessment in the first place is because they know they are struggling massively in some area of their lives. They can mask very well at level one Asd, which is whom you are referring to. So, while they may go to work, they will most likely have huge emotional struggles with certain areas of their day and once they come home, they can burn out to the point they cannot speak or move, but others won't see this. I have three autistic children level one Asd. To the outside world they are coping with life and school. It couldn't be further from the truth. The amount of support they need daily is still huge just to get through the day. To receive an official diagnosis of autism, the person will be affected in some way every single day of their lives, they don't just have good or bad days. Yes, some days they will be so overstimulated that they will have huge meltdowns but every single day is a huge challenge. The amount of work that goes into making sure that life doesn't overwhelm them is so complex, between certain foods to be sourced, certain textures avoided, space given, time out, avoidance of demands such as a simple phone call or email, making sure their mornings and evenings are the exact same every day with no change or surprises is extremely stressful and difficult for the person and their families. It may appear that they cope well with life like you do but that is an illusion. It is exhausting to be autos and mask to show others that you are coping. Every single autistic person is struggling with 'societies expectations"..they are more than struggling, they are simple unable to do life the same as neurotypical people.
I still agree however, that while they are autistic, there needs to be a sub title with each level that's diagnosed to distinguish what type of support is required. This will lessen peoples confusion. Sometimes I think if my child was more "outwardly" autistic maybe it would be easier because as of now, my childrens social anxiety is so high that I also don't see them living alone without a lot of supports. It's hard because society does not have much patience for people like my children if they have days where they can't mask or if something tiny has changed in their routine and they become irritable because they are trying not to meltdown, people don't understand so therefore they struggle to keep friends, if they have any to begin with so even though they are verbal and engaging with life day to day, they are certainly not coping well. It can be a very lonely world to be at this level because people who don't see their struggles don't accept them for who they are, often more kindness and understanding and patience is given to autistic people with more obvious signs of Asd such as being non verbal

In diagnosing ASD, the criteria ask that you specify if the diagnosis is with or without a learning impairment and with or without a language impairment, both of which lead to much greater functional difficulties in the context of ASD. So if you have issues in either of those areas and ASD as well, you may well fall under what people see as "severe".

However, people have the diagnosis because they have impairments in the required areas and how that translates in real life is so variable - a "high functioning" person may have significant mental health problems as a consequence of trying to fit in or may do well academically but need lots of help with self care due to sensory issues.

Mild is a confusing word in some ways because another example is that we talk about intellectual impairment on a mild, moderate and severe scale but even people with a mild intellectual impairment are still functioning significantly below their peers and the use of the word does risk minimising the difficulties they have.

agree. My son is 7 completely non verbal in nappies and will never be able to live unaided. My niece is 14 and is perhaps the most intelligent child I've met but struggles socially. Yet it's the same diagnos

this is the reason I have posted this.

What's important is that the persons needs are identified and met. The spectrum helps to identify which areas someone needs support with.

Autism is autism whether someone is highly affected by it all of the time, or doesn't feel the impact so much unless they are in certain situations. They still meet the criteria for that diagnosis.

Just as cancer is cancer, whether it's grade 1 or untreatable, it's still the same condition but each individual will need a personalised plan to treat them.

Or depression is depression whether someone is plodding along and managing to cope with support, or they are suicidal and need a high level of care.

Asthma, some people have minimal/intermittent symptoms others more persistent symptoms and some even affected by it day in day out just doing things like walking up some stairs. It is still asthma.

There are lots of conditions that have a main umbrella name/term.

I don't think it would be helpful to start trying to separate autism into 'mild' 'moderate' 'severe' categories and trying to make more detailed diagnoses.
Autism affects everyone differently and can also evolve and change as a child grows up and experiences different environments, expectations and levels of pressure.
I think it's hard enough accessing support for those who have SEN without having to drill down further into each individual diagnosis just to give it another name.

That sounds really tough for your children. My friends son is similar, he has a diagnosis as HFA and people often comment 'You'd never know he was autistic', however at home it's very evident, there are holes in the wall where he's punched during a meltdown and he has no friends at school anymore as thing are becoming tougher as he gets older.

My nephew though was diagnosed at 13 (although to me things were evident long before then), he's 15 now and copes very well. His only real impairment is point blank refusing to do any school work or subject that he's not interested in, he has very focused interests. He has a lot of friends but most of them are a couple of years younger 12/13. He hasn't got great awareness of other peoples space so will stand closer than is typical when he's talking to you but otherwise he's happy at home and at school. He'll be 16 in April and it's obvious he won't be staying on at school but I do worry about how he'll manage in the 'real world' because he's not academic and I don't know what kind of job role would be suitable for him.

I will say that struggling socially on its own does not lead to a diagnosis of ASD. Being socially awkward is not autism. You can be a socially awkward person and not have autism.

Children who are level 1 ASD are dealing with more than just missing social cues.

Every child I have worked with who has ASD is unique. Even two children who are non verbal and still in nappies at level 3 have their differences in their ASD.

In the next DSM ASC will be divided into autism and profound autism.

I'm a late diagnosed woman and agree that the narrative around autism has changed and those most severely affected are being written out.

YANBU I'm autistic and it's helping no one to just lump everybody in together when everyone's is different. I actually have lots of diagnosises, but I can live an independent life.

Although, you can't judge the effect that somebodys autism has on them just by what they can do. I can DO things, but my mind is quite frankly a horrible place to live and I find life very difficult.