ASD/Asperger's Syndrome/Levels 1, 2 and 3

I've been assessed re the care act 2014,and the person I regard as my daughter has had a carer's assessment. I'm regarded as being a vulnerable person. If you had a brief interaction with me, where verbal skills were very much to the fore,you might think I'm a bit 'off key' but you would have little idea of how well or not I function. It's sods law that as my mental health has improved my physical health has gone in the opposite direction.  I've gone from 14 pills a week  to over a 70 a week now. . There's premature osteoporosis,atrial fibrillation.,Barrett's oesophagus,mild iron deficiency anaemia,reduced mobility even after a partial hip replacement. I'm back to the hospital on Wednesday for yet another endoscopy to be done. Primarily for more biopsies   to be taken. So far no sign of cancer, but have not had results of the CT scan on my  abdomen and pelvis.

It could've been a lot worse though if I'd stayed in my 11th floor flat in Southend, and had those falls. Thankfully my brain hasn't turned to mush yet. I'm just about holding my own vs significantly younger people from the high IQ community.

Our autistic community cannot be categorised or simplified in terms of levels, our support needs and experiences fluctuate depending on environment, energy, stress and other factors.

Our autistic experiences are so diverse, this is what makes our community so interesting, complex and beautiful!

Autistic experiences are not linear but instead a kaleidoscope or colour wheel.

This is an interesting discussion. When my son was diagnosed we were told that they now only use ASD but previously some were told they had a PDA profile.

I can see limitations, for example where do you draw the line. I would be described as level 1 but I do not see myself as having Asperger's as I see that being people who are a lot more intelligent than me and can have discussions about things I could not understand. 

On the other hand I do see some guidance would be helpful. My son tries to be like his peers but struggles with a lot of things and I think when he is an adult he will find it difficult to be independent but would not been seen by most people that way, unless they knew him well.

Shardovan said:

levels 1, 2, and 3 had one thing in common: the person would always need support. So I don’t think there could be a ‘you have 1 so you get nothing’ policy as it contradicts the diagnostic manual.

I think the issue is that "requires support" in itself and on it's own is too vague as it doesn't indicate the kind of support you actually need or how regularly you'd need it.
It would be more helpful to assign levels to the support needed than the autism because this (below: an image that the average NT is likely to find on brief google search) is contardictory. How it describes HFA or level 1, is not at all what I'm like or the help I need, because it doesn't cover executive functioning or other factors, so if I were to be placed by the level of support I need I should have been diagnosed as level 2.5 not "level 1(HFA".) Which is what I'm trying to get at, the absence of an intellectual disability (how I got diagnosed as HFA)  doesn't accurately dictate the level of required support.

Also, we may see ourselves as not requiring 'support' but when we go back over our lives, both personal and at work, we probably have required support of one type or another, but being undiagnosed, hadn't realised that this was due to autism.

This is I think very true for me.

Because the report that I got after diagnosis said that levels 1, 2, and 3 had one thing in common: the person would always need support. So I don’t think there could be a ‘you have 1 so you get nothing’ policy as it contradicts the diagnostic manual.

I think it's to do with the level of support required.

You may require some support but still be able to live independently and not be eligible for a carer or financial benefits at level 1.

I Googled autism levels but it's hard to find this information for the UK as ASD tends to be used.

However, there are hits for outside of the UK that show that the support required (theoretically) diminishes the higher the autism level goes.

That’s a really great insight but it also slightly increases my confusion. Because the report that I got after diagnosis said that levels 1, 2, and 3 had one thing in common: the person would always need support. So I don’t think there could be a ‘you have 1 so you get nothing’ policy as it contradicts the diagnostic manual. Having said that, it’s often where my imposter syndrome sensitivities lie most strongly: I’m living essentially independently, so do I ‘count’ if I don’t have a carer or support worker so to speak? What I do have is some areas of weakness around the admin of life, good financial planning, etc. I’ve been bailed out of difficulties there on a couple of not insignificant occasions. Though now I’m basically doing ok on most ‘ticking over’ fronts, even if anything vaguely ‘yourterms and conditions will be changing’ in nature gets indefinitely put in a drawer from which I know it is unlikely to be retrieved this decade. 

I've replied to this already and it's gone into the spamometer (flagged as spam or abuse).

I think Number is correct in his thread about our disappearing posts.

I quoted 4 times from you and I think that's why this has happened.

Anyway, my comment was that I found your points very helpful for my overall understanding of this complex subject.

Actually, I'll just cut and paste what I quoted here (rather than use the quote function):

1. The problem is even if the diagnosis is/was "aspergers, hfa, or level 1" it doesn't mean people with that diagnosis can live independently.

2. NT's making assessments for support elegibility of ND folks just generalise off of a synopsis

3. if I found myself alone again for whatever reason I would need a carer, and the thought of having someone deny me that as "your autism is HFA or level 1 it isn't THAT bad" would be a terrible error

4.Because I have "HFA" according to a diagnosis over a quarter of a century old, a diagnosis of a child not yet navigating an adults world and yet I have Level 1, 2, and 3 issues in adulthood, 

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

The problem is even if the diagnosis is/was "aspergers, hfa, or level 1" it doesn't mean people with that diagnosis can live independently.

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

if I found myself alone again for whatever reason I would need a carer, and the thought of having someone deny me that as "your autism is HFA or level 1 it isn't THAT bad" would be a terrible error.

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

I have Level 1, 2, and 3 issues in adulthood,

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

NT's making assessments for support elegibility of ND folks just generalise off of a synopsis

Those points were very interesting to me Sam, and helped me understand the complexity of this subject much better, so thank you.

The problem is even if the diagnosis is/was "aspergers, hfa, or level 1" it doesn't mean people with that diagnosis can live independently.
I function well in a team of 2, but "having HFA" just means I don't have an intellectual disability, it doesn't mean I could live independently. Living alone for me was the fast route to homelessness.
Levels weren't the worst classifiction but just having 3 levels is too simplified to be accurate or helpful, because NT's making assessments for support elegibility of ND folks just generalise off of a synopsis, and don't take the time to find out what our actual needs are, if I found myself alone again for whatever reason I would need a carer, and the thought of having someone deny me that as "your autism is HFA or level 1 it isn't THAT bad" would be a terrible error.
If levels were to return they would need to be a lot more complex.
Because I have "HFA" according to a diagnosis over a quarter of a century old, a diagnosis of a child not yet navigating an adults world and yet I have Level 1, 2, and 3 issues in adulthood, which really does make the diagnosis of "HFA" useless to me and to anyone who needs to understand me.
For that reason I actually envy people who got the diagnosis in adulthood, the myth is that autistic kids grow out of it, in my experience we grow "into it" more and our childhood diagnosis doesn't reflect our current struggles in adulthood (when the world we have to navigate gets more complicated) at all.

Shardovan said:

I grew up next door to a single mother and her three children, approximately my age. Her two boys were non-verbal (language wise) though did make many loud noises, humming, singing, shouting etc. it was clear that it was compulsive, and that they were locked into their own world, relying on others to break into their bubble do to speak if any meaningful exchange of support was to occur Her daughter was different- she communicated in words, she wanted to play with me and my sister, she was able to help out around the house in a way her brothers simply could not. And yet something about her was markedly different

Shardovan said:

It says that I’m very aware that there are three very distinct levels of outward manifestation, innate challenge, etc. Level Three: that lady’s sons. Level Two: Her daughter. Level One: Me.

Once again, from your own experience, you understand this as I do.

So, when we talk about a 'spectrum' I never think I'm the same as those boys or share any of their dependencies ... I'm just not, and simply put, am much higher 'functioning'.

I have diagnoses of schizophrenia/schizoaffective and ASD(Asperger's). It can be hard to say how much each affects my functioning. Re the ASD  I'm neither a 'needs 24/7 care' type, nor am I an 'Autism is a major strength for me' type.I do have the frequent but not universal, autistic adaptive functioning < IQ  thing going on and get quite a lot of support re daily manual/practical tasks.

My psychiatric care for over 40 years was blighted by  'If you did well at x, you should do well at y' thinking by mental health professionals including psychiatrists. Failure to match up to that was dismissed as just being a major character flaw, and had me labelled as a bad patient.. That situation only changed with my daughter putting the mental health team here in Wiltshire in the picture,prior to my moving here, as to what the real picture was.
,

Shardovan said:

My own mother taught profoundly autistic and disabled children for her whole career as well, so again, having seen/heard so much relating to that (children and young adults so on their own world that they needed sensory rooms to even begin to interface with stuff outside their heads, or the most able kids who could go to the shops, run errands round the school etc. but still with significant societal challenges) I know that I have an additional ‘cringe’ factor, despite knowing its somewhat irrational, about owning without apology my own claim of autistic identity. But saying ‘I’m level one’ does help me do that without feeling I’m stepping on sensitivities. If that makes sense. 

That expresses perfectly how I see things too and why I think the functioning 'levels' matter and why, when answering questions on this forum, I always try to bear in mind that it's not all about people who 'function' as I do.

Thanks for this reply.

My own mother taught profoundly autistic and disabled children for her whole career as well, so again, having seen/heard so much relating to that (children and young adults so on their own world that they needed sensory rooms to even begin to interface with stuff outside their heads, or the most able kids who could go to the shops, run errands round the school etc. but still with significant societal challenges) I know that I have an additional ‘cringe’ factor, despite knowing its somewhat irrational, about owning without apology my own claim of autistic identity. But saying ‘I’m level one’ does help me do that without feeling I’m stepping on sensitivities. If that makes sense. 

I can see that, and I think you’ve put it really well. I have also recently taken on board how each of us has a fluctuating spiky profile that may or may not be well masked in any given moment. 

However, if I may use a personal real life example or two to suggest that ‘levels’ might still be appropriate even on a purely etiquette level…

I grew up next door to a single mother and her three children, approximately my age. Her two boys were non-verbal (language wise) though did make many loud noises, humming, singing, shouting etc. it was clear that it was compulsive, and that they were locked into their own world, relying on others to break into their bubble do to speak if any meaningful exchange of support was to occur Her daughter was different- she communicated in words, she wanted to play with me and my sister, she was able to help out around the house in a way her brothers simply could not. And yet something about her was markedly different from any neurotypical child and was even different enough from me to come across as a little (forgive the term, I was a child) ‘strange’. My sister and I, despite liking her, would occasionally privately acknowledge that we found her a little challenging in some respects. It came over in her cadence, her stimming (we wouldn’t have known that word), her relative lack of co-ordination, her fixed smile and far-off gaze. As we grew older, it was simply very clear - to anyone-at a glance, that she was (by then we knew the word) very noticeably autistic, and that her brothers were profoundly so. 

About a year ago I got talking to their mother over the wall while visiting my parents. She started telling me about how one of her two now middle aged sons - who’s spent much of his adult life in residential care- has made a recent communication breakthrough using letter board tech of some kind. She always knew he was intelligent but even she hadn’t realised just how much he’d learned, he has an encyclopaedic knowledge and near perfect recall of things going back to when he was extremely young. 

I said how great that was, hoped it was a permanent game hanger for them etc. as I did so, it crossed my mind to mention my own diagnosis. But what stopped me was… I was worried that (rightly or wrongly) this woman -who’s had to fight an uphill battle for all three of her kids-.would be insulted by my daring to say ‘oh I’ve got that too you know’. Me, who got through school, university, found a career, lives independently, reflexively masks extremely well 90% of the time. 
 
So, what does that say? It says that I’m very aware that there are three very distinct levels of outward manifestation, innate challenge, etc. Level Three: that lady’s sons. Level Two: Her daughter. Level One: Me. (With the imposter syndrome internal battle that only goes with that level I would argue) 

I know that I will never be mentioning my own autism to this woman as it’s a plain as day to me that she would find that upsetting, like an equating that I don’t deserve. I think, by the way that she herself is level one - I can see traits in both separated parents actually, both of whom have had careers etc. They are of a generation that might not acknowledge autism in themselves when their children are the ones who so prominently are the ones who stand out. 

I hope I’m putting this all sensitively enough, and I’m still on a learning curve. But do you see what I mean about etiquette? In a way I feel like saying I’m Level One (not ‘only’ level one) is the least I can do to respect those with lived experience of these hugely self-evident contrasts. It doesn’t invalidate my own struggles - many invisible to the average observer- in fact, that’s the trade-off. We who mask well because of our level end up exhausted and anxious out s and dispirited for being unseen in our distress. Those who are so much more outwardly discernibly autistic *are* seen, accommodation is unavoidable, inevitable, guaranteed. And not remotely questioned.

So in a sense there is no ‘mild’, it’s true. You either get the outwardly mild but inwardly tortured or the outwardly clear as day but with an uncompromising inner landscape not constantly assailed by the requirement to accomodate NT environments exclusively, or at all. 

I feel I could have been more nuanced and articulate here. I apologise if it’s been heavy handed and caused offence. Very much the opposite of what I intended. 

I don’t know where I read it, but I heard someone say that “the functioning label is how my autism effects you, not how it effects me.” Using myself as an example, to an outside perspective, I am “high functioning”, I have a relationship, a job, a home. But that really doesn’t account for my personal struggles. I battle anxiety everyday, I have non-verbal episodes, I can’t socialise without support, heaven forbid I ever have to talk to someone on the phone, sensory issues can be a constant battle. Many will have it a lot better and many will have it a lot worse, but my support needs don’t invalidate theirs and visa versa. We all deserve to have the support we need!

I think the labels have a place to allow medical professionals to make quick assessments of a persons state and ability, but beyond that, the supports needs of an autistic person are so dynamic, trying to group us together is a pretty impossible task and will mean people don’t actually get the support they need, as people will start trying for 1 size fits all solutions. We are individuals and all have different needs and support requirements that can vary from day to day, situation to situation, and we all deserve to have that support.

Clinicians love labels, because it allows  them to classify and then go down a set procedure to 'deal with it'. I personally don't think these labels are very helpful because the ability to function in society is so dependent on the environment and the circumstances we find ourselves in- I don't think it is fixed. 

Sadly there is just not much support out there for us. I would be worried that say someone might be classified level 1 because they are doing well at time- but then maybe their circumstances change, new job, stressful event, moving etc and they might need more support and not do well at all- would being 'level 1' then make it more difficult to get support? I don't know. At the moment I feel like regardless of labels, there just isn't much support out there at all anyways.... so not sure if the labels would help. 

Mostly in Autistic Research forums, but this chap on Twitter has created a few discussions on it https://twitter.com/twillierod

This is all news to me. I suppose because of the way I was told by the people who diagnosed me that ‘we’d have in the past said Asperger’s but now it’s level one’ that I was right up to the minute with appropriate terminology! But now it seems I’m behind. I doubt that (NI) wouldn’t adopt a UK standard as that’s how it is for most things here. So I admits that I am confused and a little unsettled, though certainly glad that it’s been raised as I want to be getting this right and not embarrassing myself with outmoded ways of talking about my identity. 

JuniperFromGallifrey said:

There is a LOT of discussion out there about labels and bringing them back. 

I didn't know that.

If you have any useful articles to link to that would be much appreciated.

Thanks.