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@hot_fiat I hope that you both get the support you need, there's a few people here who are in a similar position. I've no idea what the diagnostic process is for children but I know that it can be an ongoing battle to access services. If there's any questions you'd like to ask then please do
Had a chat with my boss today. she has a brother with similar quirks so understands me fairly well. However I found out I have upset without realising a couple of other folk! One step forwards two steps backwards
She offered to get me some "coaching" to see if I get put a filter on my mouth. I am minded to take it up.
@tjagain you sound so like me, lol. I'm surprised I've not been fired yet over some of the things I've said to my boss. I think they're the ones who need coaching in disability and neuro diversity, no amount of training could teach me to read the subtleties of emotion I've no clue until someone is bursting with anger, joy or sadness. Thankfully my kids know to use words to let me know what they're feeling, if only we could teach adults too. Take the offer anyway as it shows you're making an effort
There is a big autism awareness campaign where I work so now people can pretend they are sympathetic towards it. And then only last week I was in a meeting where people were mocking this person who had no sense of humour and was awkward to deal with/very blunt - I don't think the awareness campaign is working too well...
I suspect it’s the start of an extremely long and frustrating processs.
Might not be as bad as you fear. Depends on local authority and school a lot, has the school been good so far?
Our girl's school was mostly excellent TBH, but I've heard horror stories from parents with special needs kids at the church school down the road.
There's lots of good books around for aspergers, not sure about autism.
Lol @kerley, I'm sure it's just to make themselves feel better, there's no interest in improving acceptance as they make far too much money by "othering" us. I've noticed that there's a lot of misconceptions, I've had people who assume I can't read or construct a sentence, So. They. Speak. To. Me. Like. This. Even. Though. They. Knew. Me. For. Years.
They, never think to consult people who actually have autism.
aweeshoe
One thing I guess you have picked up is that taken as a whole women with ASD present differently to men - and as thus are underdiagnosed. In many ways its been seen as a mens thing so women tend to be diagnosed as something else.
Where are the lines? Me I'm probably a dweeb!
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tj is table serious. I am proud to be a nerd.
13/20 on that face test; half of them looked very unnatural to me, so I was mainly guessing between 2 or 3 options. Only one or two looked like a genuine facial expression rather than someone saying 'pretend to look sad, but do it rather badly'. Or possibly I'm just shit at reading faces....
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@tjagain Misdiagnosis and underdiagnosis demonstrate how little we understand about it, how are we supposed to make progress when even medical professionals miss it?
This is where the extreme male brain theory falls apart, the basis of the research is based on perceived typical male behaviours such as lack of empathy or mechanical obsessions and a misinterpretation of how autism presents in general in both genders (which are more fluid amongst autistic people than the general population). Social awkwardness is often misunderstood as a desire to be alone rather than an inability to join in, whereas I love invites to parties where I can hide amongst the crowd, or refuse if I'm all peopled out.
Autistic women are more likely to mask social difficulties by learning mannerisms and body language and utilising them, obsessions and systemising are also easier to hide. Although, we do this out of necessity rather than naturally as women are more likely to be ostracised by their peers and have a harder time being accepted. Masking is not something I'm good at, I've been told I have odd mannerisms but they couldn't elaborate.
Research has shown that women are more adversely affected by social attitudes towards autism with a higher proportion being unemployed and depressed, in fact we are the highest suicide risk group with an average life expectancy of 47!
What do I know, I'm a dork 😂 depending on what type of intelligence they're measuring (high IQ doesn't mean much in the real world)
@trumpton are there any you would recommend reading? Aspergers has been removed from the DSM as it comes under the autism spectrum but they still provide an insight. I thought of reading Odd Girl Out but didn't, and tried to read A Curious Tale but it just wasn't me (I prefer Fibonacci and the Golden Ratio)
TJs circles:
If I can have a semicircle of intelligence then I'll take one of each with an extra side helping of obsession.
@aweeshoe Thank you for your response, it was very helpful and has given me a lot to think about.
In regards to TJs circles I hopefully come under dweeb, otherwise its pure social ineptitude
I thought this may be useful for colleagues, family and friends of autistic people. We often get our information about autism from parents and practitioners; which whilst helping people to cope, it doesn't help them to understand
https://reframingautism.wordpress.com/2019/02/15/a-manifesto-for-allies/?fbclid=IwAR2ZaD7oGOHnvNajeNrL22SjxO54cyldi7sjaPvW5orbma3FEnt5zSuI8GM
I was quite surprised to learn this, especially as it carries a £1k fine. One of the requirements is to provide details of your GP and specialist, I've never been assigned any, have you?
https://www.theguardian.com/society/2019/mar/03/autistic-people-angry-at-having-to-disclose-diagnosis-to-dvla-even-if-driving-not-affected?CMP=share_btn_fb&fbclid=IwAR24vynIfTWjpsd5HF25SRyW2EdNwIL5Qy9_Hzrt_Vnjun-atNQ1G7zBG04
Standard shambolic gov agency muck up in both pointless prejudiced original decision and then failing to let anyone know.
I watched the louis theroux documentary on netflix. Such a complex condition. Apparently the spectrum is so vast that everybody is on it at some stage or point.
I wonder what's their reasoning for the new regulations, it seems a bit sinister and discriminatory especially as we've passed the same test
@rmacattack I found the Louis Theroux documentary tough to watch as it's such a negative portrayal and reinforces stereotypes, even the title suggests that only a parent could love an autistic person (although there's an element of truth in that) I don't think it did anything to advance our understanding of autism and between that and Undateables I wish they'd hurry up and advance eugenics
How many of you are Autistic?
About 1%
@trailwagger 😂 totally, I'd have replied similarly but asking "who" seemed a bit too direct and irrelevant
14/20 on that face quiz. Though it lacked options as sure a couple of them were constipation!
I sometimes wonder myself. I see traits, but then many of the classics are a negative. One though is eye contact. I struggle with that and have seen it in a few other people. Hadn't noticed until someone did the same with me and I realised I do the same. Don't think it's autism related really on its own.
A relative was diagnosed with a mild form from an early age and it's obvious really when you know. Has really good support at school which has helped a lot in managing it. Gives me some empathy (sympathy?) with people with autism and how it's handled, or not.
It's easy to stereotype autism as certain traits such as not making eye contact, liking solitude, sensitive to noise and touch, lacking empathy and being good at maths but they're just how they are viewed rather than experienced. It's a mistake many people make, it's common to hear "but you don't look/act autistic" just weird/strange/odd/quirky/special/different.
I wasn't diagnosed until my late 30's, I'd never have guessed that I was autistic from what I'd seen and heard about it. With the exception of eye contact I don't fit the stereotype, I'm tactile, empathetic and love a bangin' party, I just don't get invited 😂 Shopping is a nightmare, the glare and hum of the lights, the acoustics, people to navigate and choices to make, or it could just be that I'm tight. I don't think personality traits are what defines autism, I think it's the way in which we think systematically and logically
I have some of the traits, but have never been diagnosed, my son had issues when he was born, it took until he was almost 4 before we were given the diagnosis. He's now 18, at Lancaster University studying Human Geography, IT, Maths and Spanish, so he hasn't done bad and made his mother and me very proud.
That's great! I think providing the right environment and support helps enormously too
Late to this post. I am ASD and so is my son. I find self awareness and making a few adaptations, essential in order to make things easier. My son’s school have made a few adjustments. He can go to luch a few minutes before the majority of the school to miss out the noise and crownds of the halls and the manic rush with the queues. He also has quiet spaces he can go to to declutter the over stimulations. I wear baseball caps if I have to go to places with ridiculous ceiling lighting like large stores, shopping malls et cetera. I also have discrete ear plugs for concerts, cimena or busy crowed places. Managing conditions and a bit for forward planning make most things doable.
aweeshoe - have a look for Dr. Simon Baron-Cohen. He is a leader in autism in the UK and has interesting stuff on youtube, as well as books.
@trumpton Cheers, I will do. @roper Some good tips there, thanks! If only I can didn't look like Jimmy Krankie with a cap on 😂
https://goo.gl/images/YZnAox
No problem, A sombrero will give a certain je ne sais quoi.
@roper Grand plan! It'll solve the eye contact dilemma too, everyone is taller than me 😀
It's something that's bothered me a lot, am I autistic, although, probably leaning towards Asperger rather than Autism. I just took that test that's been mentioned and i'm hitting 34 out of 50, so that's probably a big fat yes then.
Not sure how in date it is, but the general OCD I put up with on a daily basis could probably be described as being on the Asperger side of things
`There are a few online ASD tests, this one has recently been revised,
www.aspietests.org/userdetails.php?target=/raads/questions.php
Unfortunately most of them do seem to be male orientated and so not as good as picking up female ASD behaviours. ASD diagnosis is going through quite a reform. Asperger’s is not officially diagnosed now and the disorder may be replaced with condition so ASC.
@darthpunk I'm sorry to hear that it's something that's bothered you. OCD is a different condition borne out of anxiety but they share certain elements like obsession, repetition and routine. I get quite anxious if my routine is broken, it gives me a bit of stability when there's so much else going on to make sense of
the disorder may be replaced with condition so ASC
Subtle but important I think.
Disorder implies broken.
Condition does not.
Edit: 151 on the test in that aspietests link, no real surprise.
Anyone else on this thread done Myers Briggs? The E/I distinction, MB questionairres seem to have quite a correlation with the social questions on the asd tests. I come out as strongly 'I' type.
My Apergers is managed fine, until it's not. Not that I immediately notice, I'm usually only aware that I've been rude or distant or something well after the event, when it's made plainly obvious that something I'm doing isn't quite right.
Then there's the personal struggles. Maybe quite trivial, like last night, on my long ride home, I had planned out what snack I was going to have when I get home. I knew I'd not have that much physical energy, and may not have the mental energy to decide. However, when I got in, the food I'd planned wasn't there. We had no rice. Normally OK, I'd need a bit of time to make a decision, but my daughter wanted a lift to the train station in 20min, which to me was a bit too close and I couldn't think. so I didn't have anything until i came back.
sounds fairly normal, but it's the tip of the iceberg.
I wrote this on facebook a few months ago, to try to illustrate fairly daily allowances ASD people need to make.
here goes:
Today is an openly autistic day. (This will be a long one)
I thought it might be, I woke with blocked sinuses, which has distracted me from day to day things and removed an allocation of energy right from the outset. I'm not necessarily talking just about physical energy, but the emotional energy, the social energy, which at the end if the day, is tied to the physical anyway.
We try to make things easy on days like this. Go for breakfast rather than having to decipher what products in the fridge are breakfast food, and what I actually want to eat, or don't, as I rarely have much of a desire for food if left to decide on the spot, tending to decide what I want the night before, or earlier, when I have the tools and energy to make a decision.
It's easier to justify, as we needed to get my daughter an advent calendar anyway, so we're out.
Actually, it's just easier to be presented with a limited number of options and choose what I know I liked last time.
We met one of my wife's friends from years back. I happily gave up another portion of the days social energy to that. It's always very fulfilling to meet new people and the potential positive rewards down the line are well worth it.
I ran through the plan for the rest of the day, so I know how much effort to allocate to each bit, and try to get to the 'get home' part without going into shutdown. Thought I got it sussed. Nearly did.
Supermarkets.
Not knowing 100% what you want is a really bad idea on days like today. Thankfully my wife was patient with my lack of tolerance for 'browsing', but I did need to give myself a couple of timeouts. I'd find a corner, stand, breathe, probably look like a weirdo, give myself 5 minutes to collect a plan and get out of there as quickly and effectively as possible, without just dropping the basket where I stood and walking out, like I've done many times before.
Home. Chill, do some things I'd wanted to do, and done things I needed to do. I'd saved enough for that.
Then I needed to get food.
I struggle at weekends with lunch. Weekdays are fine, I just make sandwiches, 90% of the time, sandwiches. Maybe a pot noodle, or last night's leftovers, but mostly sandwiches, made earlier in the day, so I have little choice or options to confuse me when it's time to eat.
Weekends, I could have the same. But I need to make it there and then. So requires a decision, like breakfasts. Breakfast is normally easier. cereal, toast, museli perhaps. Lunch is not so simple, I mean, do I want a sandwich? Do I want anything? Am I hungry? The clock tells me it's time to eat, and I know if I wait another hour all of my conserved thinking energy will have gone and a decision will be impossible. So I must eat.
I'm not sure I have the energy for this, but try anyway, convinced I'll feel more energised after a snack.
A few things go wrong, and I end up with getting the bread I've just cut damp as I didn't dry the chopping board off. Trivial things, but I've used all the energy that was left by being frustrated, or nearly all of the effort I had left. So I put things away.
At this point I know I'll only decline rapidly from here. But I've saved just enough to to be able to gather a few words, to form a near sentence, to let my wife know that I'm going upstairs, when asked. She asks if there's anything wrong, but I can't reply coherently, so half manage a 'no' and smile as much as I can muster. I hope she gets that message.
I spend the next hour and a half on the bed, drifting in and out of sleep, exhausted, comforted by the warmth and the oh so soothing vibration and constant sound of the tumble drier.
I'd like to say this isn't a regular occurrence, but days like these happen a lot in our house. We've learned over the years how to manage each other, but still get it wrong and Mr emotionally unavailable android takes over with logic, before total shut down silence.
Today was not one of the wrong days and I am thankful to my girls for that. I've replenished a bit of energy and thought I'd share a bit of what life can be like for an autistic adult. Most of my friends over the years I've not bothered them with my peculiarities, just socialised when I was able. My family however, had no clue what they were signing up to, and 'i can be a bit difficult' somehow doesn't quite cover it.
@lovewookie I'll just leave this here:
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
yep, in our house we work using the spoon theory.
There's a fork theory too..which relates less to the finite number of forks per day, but a returns system, gaining more forks than you expend. Particularly good model to use to consider mental health, not just mental/emotional energy of the spoons theory. Ties into identfcation of benefits from normal tasks and when it's appropriate to select low hanging fruit to maintain your functionalability.
https://thingofthings.wordpress.com/2014/11/01/the-forks-model-of-disability/
@mrmonkfinger I wondered what those letters stood for on Tinder 😂 I just did it and I was surprised to discover I'm an extrovert, I always thought I was shy. The others were innovative, thinking and perceiving which fit the asc (< I like it Roper) profile.
@cougar I'd not heard of the spoons analogy, it's a good one.
@lovewookie Exactly, you've expressed it extremely well. My family and people who know me also find me "a bit difficult". I find life extremely awkward to navigate, there's too much information coming in at once and it's difficult to filter out the crap to make necessary decisions. I need quiet time to myself each day to avoid meltdowns and shutdowns, but as a lone parent I don't often get it until the kids have gone to bed and come down for the umpteenth time because they're hungry, thirsty...
I like riding because it's the only time my mind is focused and relatively quiet. I ride on my own so I can go at my own pace, in the direction I want, or at least aim for and more importantly no demands or distractions (I've no one to ride with anyway, but it makes people feel better to think that autistic people are loners by choice) Alhough, I've hit a wall in my progression as I can't figure out how ride some obstacles. I know I need coaching but I'm not sure if someone will understand my challenges, hence the coaching thread but that's another decision to make
Someone mentioned earlier about ASD being notifiable to the DVLA. Well, the DVLA has recently backed down on this under pressure from the National Autistic Society.
https://themighty.com/2019/03/uk-updates-driving-policy-autistic-drivers-protest
The DVLA tweeted: "In our attempt to clarify the advice for drivers with autism spectrum disorders we’ve clearly muddied the waters and we’re very sorry for that. We have amended the advice on GOV.UK for both drivers and medical professionals, which make it clear that a driver who has an autism spectrum disorder only need tell us if their condition could affect their driving."
Someone mentioned earlier about ASD being notifiable to the DVLA. Well, the DVLA has recently backed down on this under pressure from the National Autistic Society.
Thank god for that because my driving is shocking.
innovative, thinking and perceiving
innovative = intuitive?
Surprised on the extrovert thing, as you've stated you need quiet time to recover, sometimes it is a close run thing and you fall on the border between the two things and doing the MB test on a different day may give a different result.
The I and T stuff points to systemising type thinking, I imagine would be common to show if you're ASC.
How the hell do you manage parenting on your own? I find a couple of days of being the parent in charge is more than enough to wipe out all my social skills. Then I end up being a not very good parent until I can get time to go off and recharge.
I can’t figure out how ride some obstacles
JCB 🙂