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?

@Hardpillow

The removal of classifiers such as high/ low only serves to help those of "high" functioning and not those who would be low.

How does it help those people?

I'm going to be totally honest here - I'm a member of a number of autistic groups, and I've never seen that. Not writing off what you're saying, just...I haven't seen that at all.

In fact, the only places that I've ever come across conflict is where there are NT parents of ND children who tell autistic folk that they can't add anything useful to the conversation, they only have "mild autism", and that they should shut up.

Anything but low functioning. I think it's a dreadful term. Grading seems far more sensible.

Eg someone is said to be high functioning. Society takes this to mean they can do more/ not impacted/ quirky. Many posters have said as such through out this thread. Removing the high functioning helps them to remove this connotation. Helps the person to feel that their dx isnt minimised.

Someone is said to be low functioning. Generally people see this as profound, Severe etc. This helps as a descriptor. Removing these type of descriptors makes life difficult.

I don't think 'mild' autism is a thing.

I've also heard families now using "real" or "proper" autism rather than severe/ profound. I have heard professionals using profound recently and believe this will be the term used more so moving forward and will be eventually given as a dx.

@ohioriver - There do need to be more asd/adhd specific schools for autistic DC who do not have other learning difficulties and these schools needs neurodivergent staff involved in design, leadership and teaching roles. I say this as an autistic/adhd adult, with one DC who is autistic and one who is ADHD (as well as neurotypical DC) and as former SEN teacher who has worked in specialist settings

I also think mainstream schools need more neurodivergent staff, to the point where there should be quotas and positive recruitment

This isn’t about segregation to “hide people away” it’s about giving autistic children the opportunity to access education in environments that don’t cause trauma. I have an autistic child with nowhere to go. She cannot cope with mainstream. There are no specialist settings available for her in my county as she is “academically capable, but has sensory issues” . She cannot cope with noise or people who break rules. She is at home with me everyday now. There are so many DC like her who would benefit from ASD specific schools.

I’ve taught in two SEN settings which were appropriate for most of the students who had learning difficulties and/or physical disabilities but never ( in my opinion) for the asd ones. Bright lights, too much noise, not enough breaks, requests to go to sensory room treated as “trying to get out of work”, no respect for their difficulties with change, not sticking to timetables.

I could go on. But most neurotypical educators just DON’T get it. The training around autism is low level, incorrect and isn’t delivered by autistic people. If these teachers are too understand then they need to just focus on asd/Adhd (I keep putting them both together as so many people have both, diagnosed or not) as it will still take a lifetime to learn. The spaces need to be designed and used in a completely different way, curriculum designed to incorporate special interests, the timing of the school day changed, being taught what it means to be autistic needs to be on the curriculum.

i’ve met young adults who have never been taught anything about autism. Some have been to SEN schools their whole lives and no-one has asked them or discussed it. They have looked on the internet and concluded that they “don’t have empathy” because the internet says so. It’s not okay.

Isn't this whole thing - autistic people who could function better with support vs adults who are disabled as well as having autism - why it would be useful to have different terms rather than some kind of "scale"?

It's not about which problem is worse. Being intellectually disabled and being easily overwhelmed (just to pluck two random aspects) are different problems and need different kinds of support. It doesn't need to be a competition about which type of autism is "worse".

At the moment I use “high support needs” or “ low support needs” to try and describe different levels. This is more accepted by the online “autistic community” it seems but it still doesn’t make things clear.

My DD struggles with some things a lot but she will be able to live independently one day , she can speak and make her needs known, make herself food, wash and toilet independently, will be able to travel independently… I think it’s insulting, in a way, to asd people with very high support needs, to insist that they are equally affected. Of course they are not.

I recently saw an autistic actress accept an award on stage. She is brilliant and most of what she said was. But she also said “This is autism, I want people to see what autism is” and I thought “Actually, it’s what autism is for you.” Autistics with very high support needs are not on stage accepting awards, or online telling others they need to “educate themselves” and policing language. But they still exist.

This thread highlights exactly why it's a bad idea to try and put people with autism into further categories.

Mild autism is not a recognised condition. It is Autism, regardless of how it presents.

So many people seem to be minimising what people go through because they're not incontinent or non verbal or attend mainstream or hold down a job. Like they are not worthy of the diagnosis that enables them to access support they need and have probably fought and waited a long time for.

I say everyone should mind their own business and be less concerned about what everyone else is doing and focus on themselves/their kids/their family. It doesn't affect anybody else if someone has an autism diagnosis but appears to be less affected than others.

Of course some people are profoundly affected by autism and have to deal with things that other autistic people don't. But as with many conditions everyone presents or is affected differently.

This is a really good explanation, and why it's such a problem when people don't understand properly the difference between a spectrum and a scale.

Then you have things like PDA, where the person can present as sociable when needed, which seems different again as it’s a chosen behaviour/presentation

PDA behaviours are most definitely not chosen!!

Those who have any experience with kids on the spectrum know that it’s important to be able to name and describe where the child falls on the spectrum, for therapies, school placement, adjustments, but instead it seems we’re rolling up into a one size fits all. Many parents of ASD kids have commented on this to me.

There are tests that can help to assess someone's profile across the different traits/ impairments on the spectrum. Agree, this is very useful. The point is that because it is a spectrum, it can't be divided into levels in any meaningful way.

We seem to have variations of this discussion on repeat. It’s ludicrous to suggest that being so overwhelmed with the world you are temporarily unable to communicate verbally with being non-verbal. You might as well equate it being dark to being permanently blind.

The spectrum refers to what pattern of impairment you have not how impaired you are.

My assessor actually used the term 'non verbal episodes' on my report. I didn't know it was wrong to say this. How would I? She is a leading expert in the field.

What the fuck is classic autism!!

@BertieBotts

Isn't this whole thing - autistic people who could function better with support vs adults who are disabled as well as having autism

Hmm. But autism is a disability?

It's what I was told DS would have been diagnosed with but the ASD term was being introduced instead. Funny because the majority in here would have put him down as 'Asperger's' based on which box they think he should be in

Each person with autism is unique. I don’t tend to go by them pictures posted on the first page, ds is such a mix bag he meets statements from all. I just say he has autism.

Ds was diagnosed with autism when he was 3, non verbal, couldn’t communicate and couldn’t understand spoken language, didn’t understand anything that was said to him until 4 nearly 5. He was classified as ‘severe ASD’ at this point.

Hes 9 next month goes to special school, he’s as sharp as a knife in some respects, (He had £5 the other day, the pack from the App Store he wanted cost £4.49, the next morning he started on me because ‘I stole his change’ and he was trying to find a cheap pack on the App Store to purchase for 51p 🤣) but he still can’t dress himself and wears nappies and can only just about use a spoon / fork preferring to use his hands, but he’s so verbal it’s unbelievable, people hear ds speak and are shocked because a lot of his behaviours are more in line with severe autism. His specialist teacher said it’s behaviours they are used to seeing with non verbal severe autism. Ds is in an autism class and he’s only 1 of 3 verbal children and the only one writing sentences and reading.

He’s now ‘moderate’ autism, (on his reports and paperwork that comes through) I would agree overall but then some days he seems more affected, can’t communicate anything to me and goes through phases of barely being able to speak, bites his arms until they bleed, rocks back and forth smashing his head and smears all over his body and bedroom. He uses pecs at school even though his language is brilliant because he can’t always communicate what it is he wants or needs. And often spends much of his school time in the sensory gym because he’s too overwhelmed to be in the classroom.

Then some days (not very often) I will have a mini conversation with him and he’ll ask me a question back and forth and very briefly I’ll forget he even has all these diagnosed conditions.

Strange for me to understand, he’s so able and capable, but very affected by his conditions.

He’s come miles and miles since he was 3 though, that I do know.

I fully empathise, my little girl is autistic and has quite a severe learning disability. She is a lovely little girl but will likely never live a fully independent life. People are always telling me "oh you should watch this show, it's got an autistic person in it", or "have you seen this new film about someone with autism", and it makes me groan inwardly because the characters are nothing like my daughter. I always want to respond "Oh, you've got a bed haven't you? You should watch the new IKEA advert!"

I totally agree with you Op.My 4 yr old DD is profoundly autistic no means of communication or level of understanding.She can not feed herself and is double incontinent.we find that even health care professionals struggle to understand or know what to expect when forms are filled in and under diagnosis we put autism.
My eldest DD is high functioning and mainly struggles with social and communication issues but is more in line with regards to what people in general and health care expect when they read autism.
I have attended loads of course about autism and this topic arises frequently.It is mainly parents with higher functioning children or high functioning adults that want to keep the umbrella term,the main arguments comes from fear that it will somehow take away from their own diagnosis.
My youngest pead also agrees there needs to be a way to differentiate between high and low functioning in a more mainstream way,very few use the levels.She has now told use Classic autism when speaking to other professionals in education or hospital with regards to DD 4 even though the term is outdated.

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The learning disability makes a difference though, so people making stupid judgments based on their perception of autism have completely ignored a key element of your child's disabilities.

Autism services are practically non-existent for all autistic people. There are a couple of support groups and that's about it.

I fully agree, OP. And I also regret that we are not supposed to use the term « Asperger » anymore.

I understand the spectrum aspects but having names for the most typical profiles would be useful. Level 1, 2, 3 is not great, specific names would recognize that depending on your « profile » your experience/symptoms/life are completely different from another profile, not just more/less extreme.