Imrahil wrote:Green Gecko wrote:Imrahil wrote:'Routine change' anxiety is often treated as a form of OCD. But then OCD/anxiety is extremely common amongst people with autism, the two diagnoses often go hand in hand.
In some cases it can be beneficial to force yourself to embrace things changing, adding more 'stuff' into your weekly routine, since you develop more coping skills to deal with it that way. Depends how bad it is; if it's a mild nuisance then it's probably okay, but if you're getting hit with an anxiety sledgehammer every time there's a change in your plans it's definitely worth trying to tackle it and dampen it back down.
That sort of thing just festers and gets more pronounced over time if it's left alone.
Pretty much and I also struggle with this (and I'm autistic).
Regarding "people with autism", just a tiny FYI (sorry if this is petty) we tend to prefer
autistic these days because "with autism" tacitly pathologises the condition as a disease we can be cured of or that is better removed or averted, so there's a very strong movement towards autism as an identity just as for example the following sentences don't make sense:
Person with gay
Person with black
Person with Irish
And applied with pretty much any behavioural and neurodiverse trait that isn't an illness. So a dyslexic person describes a person affected by part of who they are whereas a person with dyslexia is that person alongside the
other that is not part of them or undesirable.
I understand the phrase also has routes in "person with disability" so as to not define a person by their disability but of course this doesn't logically make sense either when a person can have multiple identities and not be defined solely by just one of them. The other key difference is that someone with a disability like a broken leg for example, that doesn't fundamentally change how they think and perceive the world around them so it is less of an identifying characteristic and more a permanent or temporary disablement in their mobility (although autism is also a mobility impairment...)
I hope that's cool, sorry I don't want to come off as overly sensitive, I understand people adopt the phrasing used in medicine and other vocations but don't tend to adopt the language of the people affected by that because basically nobody ever asks them, they get
talked about but not
talked to or listened to, by and large, because they are subjects of science and medicine as well as some seriously dodgy areas of psychiatry (and a massive target for quackery and scaremongering as well).
It also reinforces the myth people can get or acquire autism from supposedely adverse conditions (for example MMR or heavy metals) i.e. catch the gay when instead it is largely genetic.
There was for a time an opinion popular with pediatric practioners telling autistic people that person-first terminology was better because (or at least the argument was) it doesn't reduce the person to their condition and their condition only (i.e. labelling), but that had the opposite effect because it is rejecting that (autism) being an intrinsic part of their brain (actually the entire nervous system as it's viewed in Korea and also potentially the respiratory system) and not necessary a bad thing, so when it's split out like that it suggests something to get rid of. So you'll hear things along the lines of "autistic people prefer to be referred to as people with autism" when that opinion probably wasn't actually advocated for by or on behalf of autistic people - it often comes from parents who don't want to label their children as autistic but by that very concept and thought process they are refusing to actually accept who their child is, which leads to them not necessarily getting the support they need.
So I was raised "no label" in the sense that I never had a diagnosis until I was 21 but as a consequence of that I suffered a great deal stuggling on my own and my family being largely clueless.
Another toughtful phrase is I don't walk around with my autism in a bag and choose when to put it on or take it off, for example. It's one of those small turns of phrase that doesn't really make a great deal of sense when we start to accept people for who and what they are without that in itself being a slight on them - especially when surveyed around 90% of autistic people prefer not to pathologise their own mind which can really be quite brilliant. It's a little bit parts of the autistic rights movement with tonnes of people being cast aside by society and our health system to develop a voice to say, "I'm different and I'm proud of that, but I still deserve support, love respect and understanding", which truly is a big enough problem in this country compared to more progressive countries that there is a law named after autism but that sadly achieves almost nothing besides basically saying "we need to make life better for autistic people" and... well, that's it.
FYI, I'm on the autistic spectrum myself and I'm fine with being a person with autism. There's absolutely nothing wrong with using either reference.
Fair enough, each to their own and all that. Like, this isn't something that gets me all uppity and upset but I think the language people of any particular group choose to use matters and that's their choice. Without knowing that (of your autism), professionals meant to help us do tend to pathologise an important part of what makes a person unique, say for example some programs like ABA will attempt to make an autistic person "virtually indistinguishable from a neurotypical person", a practice I feel is wrong and inflicts real pain (including physical beatings etc) so I think without there at least being a discussion about the language itself
with autistic people it's something that free wheels and we end up having long discussions amongst clinicians etc about a group but not having that discussion
with the group. To put a short on it, my mum spent 15 years in a mental health charity transforming it into a user-led organisation that put the service users front and centre of the organisation without what is typically a lot of people talking about a group that they only understand on a theoretical level. There are a lot of autism advocacy groups out there but some of them are not autistic led and tend to adopt the language of clinicians, and so do autistic people because they will typically (but not always) echo the language that they have heard being used in the past - for example children will almost always do that. They'll blame their autism for something, or they'll resent an aspect of their brain and then that becomes the enemy and acceptance and inner peace becomes more difficult, which can lead to massive self guilt and confidence problems. "Why am I like this?" "Why do I deserve this?" "Who do I blame for this" and suchlike. I'm certainly not blaming those people, it's just a discussion around the issue of labelling and identity that comes along with any kind of characteristic that makes up a portion of who or what we are. I think acceptance is really important for a permanent condition like autism so embracing it as an intrinsic part of the self and working on strengths as well as weaknesses is very effective towards a life of well-being. Instead what society generally teaches us is that we have a disease and it needs to be eradicated in order to be better and more normal, which is a hugely destructive approach when it comes to something with no cure (like autism), and especially something that with the right support strategies in place in schools, work and wider society that difference can be largely innocuous if not objectively harmless or harm-free, even beneficial to society and the individual. And some autistic people don't want to be cured, myself included because I depend massively on a lot of my special interests and extremely high attention to detail, for example.
There are similar mindsets for all kinds of neurodivergencies that are part of a more holistic approach to living to the best potential.
As a turn of phrase, it cannot itself be wrong or morally repugnant or anything like that. There are just consequences around the terminology used to refer to people and that does have an impact however subtly on how people are perceived generally as a problem rather than people who have their own unique solutions and ways of perceiving the world.
So say for example someone like me has adult social care or clinical intervention, what with everyone's needs being a bit different, I find it irksome to go about "treating the autism" as opposed to addressing my needs as a unique individual. I don't want to get rid of my autism because it actually brings with it a lot of positive skills too.
Person first or identity first language is the choice of the person who actually has an autism diagnosis or similar, and that's a policy embraced by the more user-led support organisations, charities and advocacy groups that actually involve autistic people instead of making money out of their treatment or banging on about anti-vax and other gooseberry fool where we're reduced to a product or a scapegoat instead. It's that which is wrong but it's interesting to note that some of the more negative organisations out there do tend to refer to autistic people as somebody
with something they would be better off without;- that's sadly often (but not always) the tacit implication of treating autism as a disease. That may seem true in some instances, but it is society that needs to accept and evolve to embrace autistic talents as well as support with the challenges, not scorch the earth of all the
incompatible (as that's often how I and others I have spoken to feel about their efforts in society, "fitting in" at work etc) autistic people.
It wasn't until at some point a few years ago now, I started to think about this myself in discussion with other individuals on the spectrum that I considered the arguments for or against, but I'm totally cool with a person actually "like" that making their own decisions - I just don't think the decision should be made for them.
I also can't really say whether perhaps it's a view deeply considered depending on the extent to which an individual has been essentially forced to act and behave different in order to hide their condition (masking), so I suppose it's a bit similar to other pride or visibility movements, after years of struggling or being treated like crap for stupid things like looking at people funny, then act out at some point not wanting to be mistreated, eschewed or denigrated for their differences but to be proud of that and, personally, I am - I hardly make a point of it at all but my family had difficulty accepting it and I will very often hear things like, "you don't look autistic" and it's really distressing because that person basically undermines what I've achieved despite really struggling for years, all that time nobody understanding exactly why it does profoundly affect what life is like and how that differs for neuro(a)typical person. People are way too quick to judge and that is a huge problem (first impressions) for autistic people, especially in situations such as interviews for example, or making new friends and keeping them.
That said it basically is politics and therefore by default insufferable, I just felt it was relevant to share how I've thought about it and you certainly don't need to agree with me, I won't press anybody on it but I will sometimes point out to an organisation whether they even consider the question of identity itself.
I really hope this doesn't come backcross as untoward! Like, I was really worrying about using one of my least favourite phrases "FYI" as it comes off passive aggressive, but I wasn't really sure late last night how else to branch off a discussion. Also I am struggling
a lot at the moment but haven't been posting here about my depressed state, as I have had so much writing and admin to do on emails trying to sort my life out after being forced to move by a shitty landlord which was basically hell.
I also had this tweet come up lately which is a discussion along similar lines, has anyone, a doctor or whatever, ever asked you what you actually think about issues like this?
There is a growing and increasingly powerful neurodiversity movement and as anyone who's struggled with issues of their mind, brain and/or nervous system or biochemistry the very best thing to do is to talk and write about it, so thanks for bearing with me while I ramble out some stuff about it anyway. These are just opinions and not facts, honestly I would STFU and listen to an autistic person if they wanted to have a conversation about it, my point is that so often that is not the case, the people who are meant to help us instead ask our mum or carer or GP or something, or check the textbooks instead which are pretty much all written by neurotypical people and some of the treatments are just straight up experiments on child psychology. Like, just strawberry floating ask autistic people want they're struggling with and how they could be best helped and they'll probably enjoy telling you! And that includes the sensitive subject of how they prefer to be talked about since they are not a lab subject or a curious case or a little professor or whatever, they're a person and it's about getting to know that person to really help them.
I'm in a really tough spot now where the council I have moved to hasn't done gooseberry fool about my social care for 2 months and I have to meet a new team of PAs, tell them all my life story, and go over it over and over again like that, just so I can function doing normal things like making a cup of tea and eating a snack faster than 40 minutes without being constantly distracted or struggling with the dexterity on a bad day to assemble a basic lunch, or to disengage from certain tasks and move onto others without constantly getting obsessed about seemingly pointless stuff.
Case in point, about two weeks ago I hadn't eaten for pretty much 24hrs but instead of making lunch (I have almost no hunger triggers) I watched a bubble float across the room for 5 minutes and then stared at the pattern in the floorboards we have here in the new place for 15 minutes trying to deduce whether the marks in it were from (a) furniture or (b) a cello.
Like, that's pretty low functioning in terms of managing the things my brain gets hooked on instead of making lunch and it's all been very difficult on my own during the day when I had 6hrs a week to help me get up and eat breakfast, answer post/emails and stuff. Finally getting some adult social care from the council made a big different to my wellbeing and having a functioning routine (at least most days or 4 days a week) whereas at the moment I'm pretty snowed under.
I could talk about the continuity of care statute of the Care Act 2014 but I am tired of referencing it as our local councils cannot fulfil their obligation at all at the moment, it's really bad.
And there I shared more important things affecting me at the moment, where I began dissecting a sentence with implications, at least for me, there's an awful lot going in my mind at the moment!