Published on 12, July, 2020
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.
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.
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,
π Bees π (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.
π Bees π (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.
π Bees π (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:I have Level 1, 2, and 3 issues in adulthood,
π Bees π (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.