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?

And yes MH teams with no autism training (& why not in 2022 fgs) are hopeless at best and damaging at worst.

I have ASD and I agree OP x

Those levels show exactly why high/low functioning labels are no longer used.
My son is predicted 9s at gcse. He is also non verbal when overwhelmed. He's everything from level 1 to 3 depending on the situation. It's not something you can stick a label on.

This has been an interesting discussion. I do wonder if there is a human tendency to look for positives instead of realism that is damaging. I've seen it when people are diagnosed with a terminal illness and some bright spark will suggest that Bob down the road was cured with beetroot and rhubarb juice so it will be all right really.

Is there the same tendency to want to assume that people with an autism diagnosis are all computer genius' earning billions, whilst ignoring those with perhaps such profound anxiety that they cannot function day to day or who have complex needs like OP's chijd?

But there’s been an avalanche in ASD diagnosis and the services will take time to catch up, not to mention training and recruiting the correct level of staff etc.

Just look at the number of late-in-life diagnoses on here.

Yes. The diagnostic manual, DSM5 made it an umbrella term. Yes, it's a spectrum but someone with Aspergers 'type' presentation is very different to someone non verbal who needs support toileting, dressing, eating. The nuances are easier to understand and plan for if specific subtypes exist. Aspergers was a set of behaviours that if you were in the position of having the diagnosis or someone in your family did, at least you could recognise the needs and find a way to understand. With so many needs being lumped in together it seems very difficult to begin to understand how to help or what is needed without years of researching!!

What does annoy me a bit on these threads is the minimising of "high functioning" autism.

My DD is what would have been described as high functioning/aspergers. She's independent, academic etc.

Along with sensory issues she suffers from pretty severe anxiety. It permeates every area of her life. Now because she's "high functioning" there is the expectation that she will have a "normal" life - live independently, access higher education, pursue a career and family. And she will try to do all this whilst masking day in day out and feeling fearful of the world around her. Her life will undoubtedly be hard and she will most likely struggle with her mental health.

Somebody with "severe" autism eg incontinent and non verbal has no such demands put upon them. And arguably, may be happier in their life than my DD.

So yes it presents differently but I do take umbrage at people like my DD being described as just being a bit socially awkward or whatever because it's a lot more than that.

What does annoy me a bit on these threads is the minimising of "high functioning" autism.

What would you prefer for your daughter, and you and your family: that she had struggles but was able to live an independent life or non verbal/limited language, violent, unable to form relationships or live an independent life; likewise that you or her main caregiver was unable to live an independent life?

Not the same thing, are they?

No-one is minimising anyone's struggles in life, but they hardly compare, do they?

It depends on the individual surely ?
My son is completely non verbal as in he can't speak at all and only communicates at a very basic level and will always need 1:1 care as he is unable to care for himself .

Spot on @BeautifulWar . It drives me mad when people compare the two and peddle out this spiel about high functioning. My DS age 7 is most likely very high functioning (if indeed he is autistic at all, fairly sure he is ND but to be honest he doesn’t fit into any description) and I do thank my luck day in day out that he is - we have a fantastic relationship, he is funny, he enjoys so many wonderful things in life. He may have MH struggles as he gets older; to be honest he may have been wired to either way as I do, but I manage it and enjoy my life the majority of the time.

This such an interesting and important topic, for so many different people. It's such a shame that it so often descends into polarisation, one-upmanship and stereotypes. I wish I had some answers. Thank you to the posters who are contributing thoughtful responses; a lot to think about, for sure!

"Somebody with "severe" autism eg incontinent and non verbal has no such demands put upon them. And arguably, may be happier in their life than my DD."

My son has "severe" autism and has severe anxiety which he is medicated for. He is terrified of ordinary life and cannot cope in ordinary unpredictable spaces.

No.people like my son don't have any demands out in them ,but then again he he can't tell me he's upset or in pain or hungry etc,I'm not minimising anyone's struggles but by the same token being non verbal ,needing 1'1 care etc,isn't a walk in the park for anyone ,least of all the parents.

“Blind” is a single term that can mean anything from blurry vision to total darkness. There’s no “high functioning blind” or “very blind”.

As a parent of course my life is easier to have a child with less complex needs.

But I'm not talking about us as parents, I'm talking about the people with autism and their life, not how it impacts us as caregivers.

And yes I maintain that somebody with less societal and self imposed demands put upon them may well lead a happier existence than somebody riddled with mental health problems. Nice ableist slur btw

But people do minimise it! They don't see the sensory overload, the anxiety, etc.

You only have to read threads on here to see that.

And if it wasn't being minimised, why the lack of support? I was told I should have adapted by now. To what? The bullying? The sensory issues?

Functioning labels are controversial at best and dehumanising at worst. As @POTC says upthread, an autistic person can swing from “high” to “low” functioning during the course of a day. So in many respects, isn’t it easier to describe an individual’s support needs instead of calling them high or low functioning, or level 1, 2 or 3?

I have two autistic children and have years of experience of the ways in which children who are seen to be “high functioning” don’t get their needs met, because they don’t disrupt, get on quietly with things at school etc. And yet their social issues and anxiety are huge. Autism can present internally or externally with huge turmoil that you can either see or not see.

It’s always the “low” functioning autistic people held up as an example of why functioning labels are necessary. And since I don’t live that life I don’t understand why it’s so necessary. It sometimes feels like autism is one of the only disabilities in which parents want to remind everyone of their child’s deficits instead of the positives. I mean, we rarely see parents of children’s with (for example) Down’s Syndrome sharing awful memes like this:

I'm sorry to hear that, it must be very hard for you both. I wasn't meaning that somebody with more complex needs couldn't also suffer from anxiety

@Tinselpipes you are absolutely clueless about the amount of stress people with classic autism experience on a daily basis.

Absolutely rotten.

I think the problem is that some people with autism change over their lifetimes as they learn to cope and hide their issues so that depending on when they are diagnosed, what level they would be classed as.

I started life, according to my mother, with severe difficulties (very late in nappies, constant rocking, periods where I was non-verbal, school refusal, etc). I would probably have been classed as a level 3 as a child.

Now I would be classed as 'high-functioning' in that as a late developer I eventually went to university and got a PhD. I have had some very good jobs but burned out quickly as the masking made my life hell. I now live a much calmer life, with family support, and use the internet for everything (including WFH) to avoid going out. To visitors and those I work with, I appear normal, but the reality is that I can't cope with living a normal life.

A spectrum is a very good way of describing autism, but more education of the general public would help avoid the misunderstandings that surround it.

The recently diagnosed adults I know have never been competent and fully functioning members of society. It might look like it to you from the outside but sure as hell isn't behind closed doors. You need significant deficits to be diagnosed. Significant!

In online groups I do find many are dominated by adults in their 40s who self diagnose but have jobs, families etc. Those of us with a child with high care needs it's very different, my son was diagnosed at 2. I have no idea if he will have any of those things.

I haven't seen the levels used in the UK? I do find it tricky to understand where my son is... It's not helpful to benchmark him against typical kids development paths (which I have been forced to do in the past and he scored 0 out of 5 across all categories - that was a demoralising day)... But equally no-one will say how severe my child is. He is almost 4, non verbal, low communication etc

It's all such a minefield.

One thing I will say I do follow non verbal autistic adults on social media which I find wonderful. To get an insight into their minds and lives is brilliant.

cretinous

I appreciate feelings are strong, but that is an awful word, especially in this context. It would be good if you could request that MN remove this.

My gut instinct is I agree in that if someone says my child has autism I currently have no idea of the impact the autism has, so I have to ask 'how does this impact' and clearer diagnosis words would help.

But then, i do actually think that the discussion always centres on a non verbal and incontinent person v a married university professor. And actually most people with a diagnosis fall inbetween these two groups. It then ends up in such a muddle. Is an incontinent but verbal person worse than a non verbal but continent person or does it have to be both issues to be profound. What if like my son you are verbal but your productive language is better than your receptive the non verbal person actually follow instructions better. Is my sons need to spin 'worse' than someone elses need to twiddle their hair, even though his is really disruptive and dangerous sometimes or is it the same need for sensory input.

Its a lot less clear cut if your child is neither 'end' discussed. Mine goes to a special school with 2:1 support for his safety for context. I envisage him not meeting the severe criteria or the new word for aspergers criteria. Maybe mixed would have to suffice.