Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

@Cuckoosheep I think you asked what people who don't want to split up diagnosis terms' reasons are. I can only answer for myself, but for me, a large part of the problem is the way the conversation keeps being brought.

I don't actually have an inherent issue with more specific diagnosis. My problem is that when it's being discussed, a lot of proponents of the splitting the diagnosis camp tend to do the same thing that they themselves are frustrated with; lumping everyone together under an umbrella. I think that for the most part, people on this thread have been more open to having a discussion that doesn't devolve into a shouting match, but even on here I've seen posters make assumptions about people who are not profoundly autistic that are ignorant, or downright rude. There are major variations in presentation, levels of difficulty and levels of independence amongst those who would traditionally have been diagnosed with Asperger's syndrome or HFA, but this isn't always acknowledged. Instead, there is a whole lot of shaming and accusations.

'You lot with careers and children and normal lives'

'You can't struggle that much because you are verbal'

'How could you possibly think that your difficulties are similar to my child who is doubly incontinent?!'

It's hard not to get defensive when you feel you are being attacked, and it can be really difficult to keep calm when feeling misunderstood. In addition, hearing those comments raise alarms for me. If people already think that people who are not profoundly autistic breeze through life as it is, what will that be like if we go back to separating the diagnosis? How will I be able to advocate for my needs, or the needs of my mum? Will she go back to being abused? Will we be homeless again? Will I be able to afford private care? Just like the parents and/or carers of profoundly autistic family members want the best for their loved ones, I want the best for mine.

As someone who doesn't fit in either the quirky professor or the 24/7 care group, I'm worried that an increased focus on A vs B will undo some of the recent efforts to highlight how varied the spectrum can be. That not everyone fits into a neat box, and that I might need more help than people expect, despite being verbal and of normal IQ. I'm fully aware that this sounds selfish, but similarly it sounds selfish to me that some who want the distinction have no issue with lumping everyone else together as needing minimal support in other to help their argument.

I'm not saying that you have done this btw and I appreciate being able to have a conversation about this. I personally feel not much in common with the ND movement; I couldn't care less whether someone uses autistic or has autism, I use both. I also in no way think that I am 'equally disabled' as someone needing 24/7 care. I understand that there are people who want to celebrate difference, but I have a disability that I'd rather not have, not a superpower. If a split in diagnosis can be done in a way that wouldn't negatively affect me or my family of course I'd be all for it, but the way some people interact on the matter doesn't give me hope that this is the case, so I'm worried.

I’m amazed the main reason for wanting the merge is to “borrow” some of the kudos of profoundly disabled people. That can’t be the driving reason? It doesn’t sound plausible.

If you are referring to my post, that is not at all what I said.

That's not what the PP said, at all.

Earlier in the thread one poster said "I just want the diagnosis so only refer to people who present like my son!" (or words to that effect). And that is the problem. That will never happen because it is impossible to draw thresholds in any meaningful way, people's needs are so varied across a broad range of different areas, the practical logistics of reassessing everyone's diagnosis into the new categories, and also that "presentation" isn't always an accurate way to measure experience/ need, anyway.

It's perfectly normal for many, many medical diagnoses to span a wide range if presentations and needs and severity, again as many PP have pointed out. That doesn't at all imply that people think everyone with the same diagnosis is affected to the same extent or in the same way.

I wasn’t referring to anyone’s post in particular I was saying that’s what I was reading repeatedly on this thread and that it sounded implausible. There’s no need to explain the breadth of presentation again.

And even if you divide it up and draw new thresholds, there will be range within those thresholds. Some people will always be at the extremes, aside from the problem of people who overlap characteristics of both areas. I think all posters have sympathised about what is motivating the frustration, but the solutions proposed would likely make things even more complex and misleading.

And like everyone else of course I have no interest in people "self-diagnosing". How absurd. I'd never even heard of that until this thread. Presumably these are just attention-seeking idiots and chancers on social media so best ignored? That's obviously massively offensive to anybody autistic, to turn their disability into an "identity".

I'd never even heard of that until this thread. Presumably these are just attention-seeking idiots and chancers on social media so best ignored? that’s interesting. Do you attend any support groups?

I used to attend a support group and don't remember any self diagnosed adults.

Did used to know someone who claimed he was Autistic because he was good at maths.

I am seeing it a lot on social media recently.

@SleepingSnowRedInBootsAndThePea I made a comment like that but it isn't with the intent of lumping everyone else together or denying their needs. It's with the intent of having a diagnosis where I could say it and it would be understood that I was talking about someone with very complex needs who will need care for the rest of his life. He currently requires 2:1 support when out "in the community" this is vastly different to the posters on this thread. I've also said I'd be happy for those even more severely impacted than my son to have their own dx or get separated first or as a matter of priority even if he didn't fit that criteria as I'm acutely aware of what that would mean to those families and the impact it would have.

@Familyofthem thank you for saying I hadn't said those things, I'd ge defending myself no end if not. Families like ours get comments from the other side "autism mum" is now a slur. Not saying you've that I'm just showing that there is animosity and bad feeling each way. I do think you've Implied that splitting the dx will impact as you or your family as the dx won't be taken as sweiously or as a serious disability I think a previous poster said it would minimise their dx but thst is what has happened to those who have what is the classic autism dx.

I'm glad this thread has turned more into a conversation with participants with all views, I think its really important that these are had even if just on mumsnet.

I think a huge step forward would be to have some set language put back in or at least for clinicians to be able to use better descriptors with out fear of backlash. Ultimately I see autism as a medical dx and think we should be able to use wording like severe, dysfunction in conversations without it offending someone or the risk of offending.

@SleepingSnowRedInBootsAndThePea I do believe it's highly likely the dx will change to at least include "profound autism" as it has spread quite considerably in its use since the Lancet report outlining it and why it is necessary. So the split is already on the cards.

I'm also surprised you've not heard of anyone self identifying as having autism or being autistic, it's becoming really common. I just did a quick Google and quite a few papers and articles came up mixed in with people having autism who gender Id.

Oh it's nice we are back to discussion, albeit challenging.
The ND movement seems very much at the minority model of disability. I'm going to read the original stuff if I can find it (I know the back ground) to see how those more severely and consistently affected across all areas, are included if at all. The only place I see it is in spaces where people can communicate verbally or in written form using a range of vocabulary.

Self dx or self Id is very well established. Either people who are waiting on lists, having recognised traits and can't access an immediate assessment. The other example
Is usually quite vocal on SM platforms.

It is good to see self ID not being supported on this thread as on some other threads it is supported and I really think it is harmful. @Punxsutawney and I were called toxic because we disagreed with self ID on a SN Chat thread a few months ago.

Someone said earlier on the thread they had seen the use of “self suspecting” which I think is a good way of looking at it and keep the diagnosed and not diagnosed boundaries clear.

Just, yes I remember that thread!

I agree (it may even have been me!) - I never referred to my kids as being autistic or x diagnosis until we had it confirmed, I used to say they had difficulties with xyz.
But the waiting times or cost mean an adult diagnosis is out of immediate reach for a lot of people so I don't want to exclude people from peer support if they suspect they are autistic and recognise some of the struggles and strategies that may work.

I'm aware of the autism mum slur and I know that this animosity goes both ways. A space like this has more representation of parents of autistic children than other spots on the internet (other than perhaps FB but I don't use that), so for me it's a useful space to get to hear from people with experiences separate from mine, when discussions can be kept civil. I would love for there to be a support group for people with parents on the spectrum, but I haven't come across one yet!

I also see autism as a medical diagnosis. One thing that is hard for me to wrap my head around is how we move towards more distinct diagnoses without that impacting opportunities for people who were traditionally missed to get diagnosed. Aspergers merging with HFA was (as far as I'm aware) mostly due to the similarity in outcomes between the two conditions, but I think it also helped kickstart the move away from Aspergers = boys and trains, as well as seeing that part of the spectrum as purely a group of socially awkward people who are into math. None of that to me is about piggybacking on the profoundly disabled; it's more about making sure that the narrative around splitting diagnoses does not become 'group A' vs 'group B' where both groups have a set of pretty rigid criteria of presentation.

Basically, assuming that it is fairly straightforward to define and diagnose profound autism, how do we ensure that this doesn't lead to people thinking it's fairly straightforward to define the rest of the spectrum, which can be more fluid and/or spiky etc. (I can't tell if that sounds offensive, but it's not meant to be).

I don't think either my mum or me would have been diagnosed with Asperger's, despite us both technically fitting those criteria (no speech delay before the age of three). I'm not sure, if I had to subdivide her into a more narrow diagnosis, what I would call that. I think part of my question is about how you might tackle that. Presuming we have a separate diagnosis for profound autism, how would you look at the rest of the spectrum? What lines would you draw and how would this affect both diagnostics and outcomes. Curious too what parents of autistic children who would say their child is neither profoundly autistic nor independent would want a division to include.

I agree with people saying they suspect they have autism or are waiting for an assessment, but for some, like on the thread Punx and I were on, that isn’t enough and they want to say they are autistic/have autism.

Yes. Everyone in my support group is diagnosed. People get offered to join the support group when they receive their diagnosis.

It's an awful idea as well as being ridiculous. I think a very large proportion of autistic people would object to self diagnosis. I have only seen it on Mumsnet actually - those awful threads where people write horrible things about having abusive partners and claim it's because they are autistic even though most seem to have no diagnosis. I found it shocking. But then I don't use other social media like instagram or tiktok so I guess I have avoided it elsewhere.

Families like ours get comments from the other side "autism mum" is now a slur. Not saying you've that I'm just showing that there is animosity and bad feeling each way.

That is appalling and I'm sorry you have experienced that. Also ridiculous because, unsurprisingly, autistic women are often also mothers to autistic children!

@SleepingSnowRedInBootsAndThePea don't be daft it's not for you to apologise. You clearly steer well clear of such posts/ conversations. Their are parents who say equally as bad things. I was just using it as an example.

Curious to what parents of autistic children who would say their child is neither profoundly autistic nor independent would want a division to include. my sons paediatrician suggested “significantly impacted”which is accurate.

Here more and more self diagnosed attend support groups and within my rl friends several are very vocal about their non-diagnosed disabilities. I find it a bit confusing and shy away from discussing it because it’s not my place to police the dx yet it has made things harder.

I self diagnosed before my diagnosis and would again. I have children with autism and other family members, also family who work in the field. It was as clear as day.

I too have experienced a lot of pushback for speaking for (advocating) my dc. It happens fairly regularly on MN but in RL too. I think it’s unbelievably hurtful if I’m honest. Normally the person has very little understanding of what our lives are like. They imagine “there’s load of help for the more obviously disabled” (no there isn’t), and that you “think their lives are easy” or for me the really cutting idea that my child lives in some sort of happyclappy tele-tubby land and so has it easier because they don’t understand.☹️