Simon Baron-Cohen can stuff right off

[Jet]

Bats, I had no idea. But power to you for going through all that, and being shouty and I love reading what you’re ranting about. In fact I felt a bit sick at some of it ringing true personally (the social stuff mainly) - not to be me me me but I’ve aways felt misplaced and like i can’t follow social stuff like others do, like I’m a clumsily stomping through other’s normal conversations (it doesn’t get better either, it gets worse with new scenarios).

My mum (teacher) thinks ‘most men are a little bit A’ but I wonder about her thoughts and experiences about women. She’s never mentioned it outside of children she’s taught (boys), my dad and my ex.

[Leap]

I had no idea Bats, I distantly remember the time you were forcibly taken for cakes for a bit, but what you were dealing with then and the journey to here seems like a long road. I think Mrs D put it perfectly.

[smalex]

Yes I'd like to know more about Smun's PhD too please?

Bats (&Smun) how have your family / R reacted?

[Bat Macdui]

Autism Labels and Diagnosis 101

Background
Whilst there are several papers and bits of research before him (including a pioneering woman whose name has now, obviously, been totally lost from the records), Hans Asperger is credited with 'discovering' autism. He was working in Austria just before WWII. Since his studies, definitions and diagnoses have developed, sometimes in really unhelpful ways, to be what's in the diagnostic manuals today. Until very recently there, autism and learning disability have been conflated, and it's only in the last few decades that researcher have started to split them out. There are a lot of stats out there which seem to show that autistic people are more likely to have a learning disability, eg the National Autistic Society (NAS) say 50%. This is total bollocks, as it doesn't take into account the 'missing women' or the people like me, or my mate D from the walking group, who has never got a diagnosis. It's helpful to make this clear from the start, as it's a common misconception.

Asperger's Syndrome
As a term this was created in the 60s by a wonderful woman, Lorna Wing, to cover those people who were patently autistic but didn't have a learning disability or particularly high support needs. According to the diagnostic manuals, the main differentiation between autism and Asperger's was that people with Asperger's Syndrome didn't have a language difficulty. Despite this being the criteria, what it's really been used as is a shorthand for 'autistic but alright really' or 'autistic but clever with it'. :)) A lot of people like their Asperger's label and like being aspies. But there's been a push back recently, since it came to light that Hans Asperger was complicit in some elements of Nazi euthanasia of disabled children. I've a whole other post on that. :)) A lot of people I know have switched to describing themselves as autistic. I think it's entirely up to them, obviously. Asperger's has now been dropped from both the US and UK used diagnostic manuals, so if you go for diagnosis now, you will get an autism diagnosis, not Asperger's Syndrome. Interestingly, I wouldn't have been diagnosed Asperger's anyway, as I had a language delay (tonnes of speech therapy when I was young).

Autism Diagnosis
If you (or your child, or a child you know) goes for diagnosis now, they will get diagnosed with autism. There are 4 categories or 'support levels', which are supposed to reflect how much support you would need to live an independent life. I was diagnosed as autistic support level 1, which means I shouldn't need carers, or PIP etc. That's a very brief way to describing something massive, btw. HOWEVER, support levels shouldn't be conflated with ability, either. There are some autistic people I know of who are support level 3 or 4, who are very bright and capable. There's a lad I follow on Twitter, Jamie Knight, who is probably level 3, who has just bought a fabulous flat and works in web programming for the BBC. However, he's frequently non verbal and needs carers to organise his life round him so he can cope with day to day life.

High-functioning/low functioning
These are not 'official' diagnosis terms but are frequently used as shorthand. Most autistic people dislike them as it muddies the water a bit. So, is Jamie, who I talked about above high functioning or low functioning? :)) I am 'high functioning', but I'm also an alcoholic with self harm issues, a history of eating disorder problems and one pretty good suicide attempt under my belt. That doesn't sound very high functioning to me. :)) The lad who wrote The Reason I Jump, would be considered low functioning, but he's written a book that's changed perceptions of autism globally. Etc

Person First Language
I call myself autistic, rather than a person with autism. I am going to borrow Turtle Bean here, as a helpful example and counterpoint. :)) Turtle Bean is a person with diabetes. If you took the diabetes away, she would still be Turtle Bean, but without the additional annoying faff that comes with managing insulin and blood sugar. If you took my autism away, there'd be nothing left, as it makes up who I am. So I am not a person with autism, I'm autistic. People get a bit cross about this, especially when organisations like Autism Speaks still exist as searching for a cure. Because that's baby step away from eugenics when autism makes who you are and isn't just a cumbersome add on.

[Bat Macdui]

Neurodiverse/Neurotypical
At its more basic level, Neurodiverse is supposed to cover off people who have what's been characterised as 'developmental disorder', so autism, ADHD, dyspraxia, dyslexia. Anything that's been identified as different due to a difference in brain development from conception/birth. Neurotypical is everyone else. It works on the level of being a much nicer term than ASD* and a shorthand for difference. But people don't like being neurotypical. SHOCKER. I dunno, I quite like it. I have a keyring with 'neurofabulous' on it.

*There's a lot of chat about this as well, including a rename to Autism Spectrum Condition. Because who wants to tell their child they've got a disorder?

[George]

Bats, that is so well written and SO interesting. As someone who has spent a lot of time working with autistic children, it strikes me that this is the first time I’ve had the chance to listen to an adult speak about their experiences coming to an understanding of it all. Thank you.

[happyhighlandcoo]

Gosh, Bats, you've been through so much. It sounds like you've had such a tough time with it but seems you're coming into a good place now you've got a diagnosis and things in place.

I love the cartoon you shared and thank you for the definitions and explanations. The way of thinking of the spectrum as the circular colour palette is brilliant and really helpful.

I'm glad you're harnessing it and being neurofabulous. You're a great ambassador for women who may feel they have autism.

[Cerise]

Bats, that is so well written and SO interesting. As someone who has spent a lot of time working with autistic children, it strikes me that this is the first time I’ve had the chance to listen to an adult speak about their experiences coming to an understanding of it all. Thank you.

I absolutely agree with this.

[Bat Macdui]

Thank you. There is actually a massive push at the moment from autistic adults to get their voices heard. Nothing about us, without us. But obviously change like that is always slow coming, slightly hampered by the fact a lot of autistic people find it hard to contribute in the ways that you would normally contribute, ie, networking, going to conferences that formulate policy, being on steering groups etc. If you get massive anxiety travelling by train, then you're not going to be able to get to, then shout at, a big meeting full of professionals and academics who think they're right in the first place. :))

There are a couple of really good books I would recommend even for just the vaguely interested reader. Steve Silberman's Neurotribes is pretty much a deeper version of the 101 I did above, and explains wonderfully how we got to where we are now in perceptions of autism. It's fat, but do feel free to skim bits, especially the stuff about the vaccine wars, which can be summed up as Andrew Wakefield is a massive twat. :)) There's also a couple of really good memoirs written by autistic women. Laura James' Odd Girl Out is the best. Obviously I would like to give you all a reading list and make you report back.

As a resource, there's also the NAS module on Women and Girls. I haven't done it (I really should, so I know what I am recommending). It's free until April 2019, and was created mostly by autistic women, some of whom I know and have met and are wonderful. Here. I'm not really intimating everyone should do it, but I think maybe George and Cerise and Ruby (and there's another teacher, I think, whose username I can't remember) would find it helpful professionally as well as generally.

If it helps explain all this info dumping a bit more, you've probably heard about autism and 'special interests'. This is normally reflected as little boys obsessing over Thomas the Tank Engine, or weird men train spotting. The thing is, most autistic people will have special interests, and that simply means they massively deep dive into a topic, sometimes for their lifetime, sometimes for a couple of years. Some researchers have done some work on this, and have shown (like what we all already knew if autistic) that these are really helpful to autistic people. They provide calm time and solace in an unpredictable world and are excellent for mental health. So there's a move now to try not to curb what might have previously been seen as an unhealthy obsession, but to let us just get on with it. Anyway, autism has been my special interest for a couple of years now. For previous, see also, motorways, Eastern Europe, Stephen King. :))

[Pippedydeadeye]

That’s so interesting and revealing, thank you. It’s really changed the way I was thinking of autism.

I do think my MIL could be autistic; she reacts very differently to other people and it makes a lot of sense. Do I am hereby vowing to be more sensitive to her “quirks” as they are probably not intended in the way I choose to react to them.

You’ve obviously spent a long time thinking this all over and it really shows in how articulate you are on the topic.

[Pippedydeadeye]

Don’t forget lawnmower selling. :))

[Bat Macdui]

I am still deeply wounded that none of you thought my lawnmower selling was as interesting as I did. :verm:

[overthehill]

Bats, that is so well written and SO interesting. As someone who has spent a lot of time working with autistic children, it strikes me that this is the first time I’ve had the chance to listen to an adult speak about their experiences coming to an understanding of it all. Thank you.

Seconded. Perhaps I feel a little guilty at finding your story and your [extremely well written] explanations so interestng, but R and I have been having this sort of conversation about his brother, M, who has never been diagnosed, but would seem to have a lot of the traits of an autistic person.

I saw something quite recently that went some way to 'explain' (not the right word) why women so often go undiagnosed. Knowing me, it was probably on FB, but it was a short documentary involving a speed-dating scenario, where all the women had been diagnosed with autism, and none of the men noticed that there was anything different about them at all. The point that came across was that they all made such a huge effort in social situations that they came across as quite the opposite to how they actually felt inside! Most of them said that, although they were glad to have taken part, the situation was so stressful for them that they had had to lock themselves away to recover.

[cluefree]

This is really fascinating and you’ve explained it so well. I didn’t really “get it” before, but I have more of an understanding now. Thanks Bats.

[Smunder Woman]

I would warn that Neurotribes is what got me started on researching the really grim stuff :))

I will answer the PhD question later when I'm not on my phone, but it's basically about levels of knowledge and whether there is a difference in how the progression happens in neurotypical v ASD. Of course, that may be enough for most people, but I will wang on a bit anyway :))

[Florin]

This is really interesting to read and really glad you have a diagnosis and that it seems to be really helpful for you to understand yourself.

I have a real professional interest in this as see manya young woman with anorexia, self-harm, anxiety and even psychosis - and mental health teams are finally starting to look at whether autism is somewhere in the heart of this. I read some of aspergirls (book was at work) recently and it was really interesting and it made me think of ASD in different ways

[Luce]

I am sitting so comfortably for this thread. You've completely opened my eyes, thank you.

[Bat Macdui]

Bats (&Smun) how have your family / R reacted?

R said 'I thought there was something, but I thought it was ADHD'.:)) Which I also think I have a LOT of traits of and quite often sits with autism. But I'm coming to terms with the autism first before I do anything else. Otherwise, he's accepted it quite cheerfully, and I've talked to him all along about what it means, and what I think it means for me. He came to my private diagnosis interview and that helped him make sense of a lot of things, I think.

My sister didn't believe me at first. "But you're really social!" "But you're fine, really!" I think this is part of what prodded me to diagnosis, as I needed the sort of official confirmation to prove to her. I did do a massive I TOLD YOU SO at the end of my private diagnosis (she was there, too). She's been brilliant since, doing little things to help, like telling me what time she'll arrive when visiting, instead of a vague 'mid morning' which gives me the raging anxieties.

My Mum completed the pre-diagnosis form with me, about my early life and said "Well, if you're autistic, I am too." I refrained from saying 'yeah, I know'. :)) She doesn't talk about it much, but she listens when I explain things and has read a couple of books I gave her. It's really helped me 'get her' a lot more. I know a lot of her negativity probably comes from enormous levels of anxiety, and her structure and routine are important etc. I actually started really feeling for my sister after I thought about the implications. In my private diagnosis interview, G was talking about how our upbringing had been really rigid and structured. Same meals same night on rotation, clothes laid out for school the night before, enforced tidiness. I had never actually noticed this, much less felt oppressed by it, but it became very clear to me that poor G must have really struggled in that household. She also really struggles with Mum's lack of affection and inability to say 'I love you', whereas I am like, totally fine with this. Plus, I effortlessly get on with Mum, whereas G really struggles (and Mum struggles with her).

[Smunder Woman]

I haven't mentioned it to my family, I'm not sure I will tbh.

[happyhighlandcoo]

I'm a teacher (maybe the one you were trying to remember) and I'll definitely do the module, thanks for sharing. I have an autistic girl in my class this year, currently undiagnosed due to parents refusing for years but being diagnosed at the moment, and have definitely taught other girls with traits. Your recommendations are really helpful, as well as generally interesting.