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

One thing I've always struggled with since being on this forum and understanding more about autism, is the fact that levels are no longer used.

I understand the idea of the spectrum and that we can all shoot off at angles and pick up where something affects us deeply.

However, levels were to do with the amount of support required, so how much a person's functionality is impacted by autism.

Level 1, 'Asperger's Syndrome', 'high functioning' were for people who had what was then termed as 'mild' autism.

I realise that 'mild' probably isn't appropriate for us.

However, there are threads on this forum relating to a 'solution' for autism and 'acceptance'.

I can answer for myself and my own struggles but I feel sometimes that the people who are without speech (some of whom I think are actually on this forum, from reading profiles), who cannot live independently without support, are not taken into account.

This is a reason why I actually find it quite hard to answer these questions, because I see myself as 'level 1', high functioning and I can't answer for people whose lives are so very deeply impacted by their autism and their carers.

Parents
  • 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.

  • 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. 

Reply
  • 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. 

Children
  • No I don't think you're misunderstanding, I find the implications of what they are suggesting to be deeply problematic too.

  • Is that what ‘support’ is - assisted disguise? 

  • Those definitions feel weird. Slightly insulting? Almost like they’re saying ‘we think we can teach L1’s to be better maskers and - god willing - fit in as they should’ Am I being too harsh here? Misunderstanding? 

  • I agree, I am also not a fan of this diagram and the associated descriptions. It also misrepresents the idea of a 'spectrum'. As far as I have understood, the 'spectrum' represents the diversity in the autistic community- ie there are several different autistic traits and each autistic individual can have different combinations of these traits and may have each trait more or less strongly. But it does NOT represent a spectrum from 'slightly autistic' to 'severely autistic'. - this diagram seems to support this misguided view of a spectrum in terms of levels of 'severity' . And it portrays 'hiding'/ masking autistic traits as a 'desirable' thing... ie Level 1 don't seem autistic if given support (what does support even mean here?) - so basically more masking... . There are just so many things wrong with this diagram in my opinion. 

  • 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.