The ASD thread (Autism Spectrum Disorder)

[Dougella]

^ It seems like something that can really help autistic people progress is having someone who can accompany them to do things and support them, whether that's a friend, a partner, a family member or a support worker. Unfortunately a lot of people don't have someone like that and one to one support for people after the age of 19 seems to be pretty difficult to get.

[firemonkey]

Exaggerating or trivialising the effects of ASD are both bad sides of a coin .

[Dougella]

Originally Posted by Freyja

^ It's not difficult you just need to know where to look and that's pretty simple honestly I think it's just not knowing where to start that seems intimidating, there's tons of autistic and anxiety meetups over the internet though, it's just having the courage to go y'know what ok sod it I'll go and do it and keep trying. Look at me, I ended up going to another city on a train for someone every time, still helped.

You don't even have to go to specific ones like that, just the ramblers alone has helped so many people with mental health issues, it's just getting going that's the hard part but when you overcome that nothings gonna stop you.

Autism is an extremely complex condition, people who are autistic can be very different and the things that they struggle with can vary greatly. To suggest that someone just needs to learn where to look and go to some meetups is hugely simplistic. (For a start some people with autism will always struggle to travel alone, for many different reasons. It would be downright dangerous for some people to try to get on a train by themselves to go to a meet up.)

[firemonkey]

^ Thanks for pointing that out . I am one of those who would very much struggle to get to places on my own . Those on the spectrum often have adaptive functioning/daily living skills that lag significantly behind their IQ .

[Dougella]

^ No I'm not saying it's impossible at all and people should be able to do as much as they want to and are capable of. I'm just trying to say that it's very hard for adults to get appropriate support in a lot of cases right now.

[firemonkey]

^^ Your glib comments are not helping .

[Deer]

I don't think your views have to be mutually exclusive. I think you are both correct but just looking at it from different angles. Dougella is looking at it from a societal point of view, and Freyja a personal one.

There are limits to both.

One thing I will point out from your posts though Freyja is that you seem to think Autistic people want to be able to live like NT people, and you view the 'disorder' as if something needs to be fixed. I think that is where your approach kind of breakdowns.

like most things that 'just' need to be work on with sheer willpower, the thing you are asking them to do is probably abnormal to them which is the main problem with people have autism! They are forced to be like NTs when they just aren't that way.

[Deer]

Having said that, kudos to the approach you had with your friend that does seem like a very worthwhile and productive relationship you both had developed.

[firemonkey]

I have no problem with people who want to help people on the spectrum with their difficulties . Where I part company is with the belief that it's easy to get such help , and that it's all down to the person with ASD making the effort.

That trivialises the issue . Like many on the spectrum I have a spiky cognitive profile . That points to having a learning difficulty . It's never been dxed because if you were a bright child in the early 60s to mid 70s it was never considered you could have a learning difficulty .

It's not through lack of effort that people like myself have difficulties . It's a combination of having very high/superior crystallised intelligence along with significantly lower fluid intelligence .

People on the spectrum often have difficulties with daily tasks of living that's out of whack with their level of intelligence . They also often have executive functioning difficulties( in my case especially organising, planning and multi-step tasks)

It took 62 years to get an Asperger's dx . The very real learning difficulties have never been recognised by a professional . Indeed my stepdaughter is far more aware of the gap between my verbal and non-verbal/practical ability than any professional .

I do my best but some things are difficult , irrespective of how much effort is made in trying to master them .

What people like me don't need is people pushing a 'If you make the effort, it will come to you' line .

[gregarious_introvert]

I've been reading these recent posts with interest and whilst I could write a very detailed response, I'm using my 'phone at the moment, so this is the shorter version.

Firstly, I agree with Nanuq about the issues which masking can bring - and masking is something which is rarely conscious, it's peculiar to girls with autism who subconsciously reflect what's around them, which is an alien environment to the way in which they think; whilst it may make them appear more neurotypical outwardly, it also suppresses their nature which basically means they are pretending to be something they're not. At the same time, it's also true that learned behaviour can be beneficial, but not when that means living a lie.

I have never wanted to be neurotypical - I am proud of my individuality and like the way in which I think and view the world; I am one of the lucky ones who could be correctly described as "high-functioning" but I have met many others on the spectrum for whom life is nothing but an eternal uphill struggle. A few years ago (seven, to be precise) I was lucky enough to find someone who was able to help me learn about non-verbal communication (mine and that of others), which finally enabled me to interact on equal terms with the neurotypicals without ever trying to become one. It has changed my life, but not changed me - and I have also discovered that people are more accepting of difference when not confronted by a demeanour which they find challenging (of course, it would be good if they could learn to recognise the person behind that demeanour, but the world changes slowly, one mind at a time and I take whatever victories I can find). My own belief is that masking is not the answer, but learning to make slight adjustments is of benefit.

In terms of finding help, this varies from region to region; I live in Derbyshire, where my autism diagnosis has caused any help to be withdrawn - the local mental health team claims not to be qualified to deal with autistic people and I'm unable even to register with a GP because, for those whose catchment area I fall in, tell me that their staff are not trained to deal with my issues. I live on the borders of two other counties - South Yorkshire (I was diagnosed in Sheffield) and Nottinghamshire, both of which have excellent mental health services and special programmes to help people living with autism.

In terms of meetups and other groups for people with autism and other closely-related conditions, I have participated in many of these, but they lack structure and professional input, so are really only helpful to those who are sufficiently high-functioning to be able to help themselves. I have tried to offer what help I can (and will continue to do so) but as was mentioned above (sorry, I don't remember who said it), there are many who are unable to undertake journeys alone and so are not able even to attend such groups (I have offered to bring people to groups, however distrust of strangers is also another factor which can't be overlooked).

It's true that with the right help, many of us can lead better lives - but that help has to be tailored to the needs of the individual and the resources in terms of people able to determine what those needs might be are sorely lacking.

Sent from my SM-J330FN using Tapatalk

[Dougella]

^ With regards to the distrust of strangers being a barrier to travelling with someone there's also the other side of the coin where people can be too trusting and put themselves into potentially unsafe situations because they're not able to accurately judge people's intentions. (My Mum works as a one to one support for teenagers, many of whom are on the autistic spectrum, and some of them have this issue which can be particularly dangerous for young women ofcourse. So having someone appropriate to go with them to things is very important.)

[firemonkey]

Originally Posted by Dougella

^ With regards to the distrust of strangers being a barrier to travelling with someone there's also the other side of the coin where people can be too trusting and put themselves into potentially unsafe situations because they're not able to accurately judge people's intentions. (My Mum works as a one to one support for teenagers, many of whom are on the autistic spectrum, and some of them have this issue which can be particularly dangerous for young women ofcourse. So having someone appropriate to go with them to things is very important.)

Williams syndrome .

Among the hallmark traits of people with Williams syndrome is an apparent lack of social inhibition. Dykens and Rosner (1999) found that 100% of those with Williams syndrome were kind-spirited, 90% sought the company of others, 87% empathize with others' pain, 84% are caring, 83% are unselfish/forgiving, 75% never go unnoticed in a group, and 75% are happy when others do well.[37] Infants with Williams syndrome make normal and frequent eye contact, and young children with Williams will often approach and hug strangers. People affected by Williams syndrome typically have high empathy, and are rarely observed displaying aggression. In regards to empathy, they show relative strength in reading people's eyes to gauge intentions, emotions, and mental states.[38] The level of friendliness observed in people with Williams is often inappropriate for the social setting, however, and teens and adults with Williams syndrome often experience social isolation, frustration, and loneliness despite their clear desire to connect to other people.[35]

https://en.wikipedia.org/wiki/Willia..._psychological

[Dougella]

^ Yes, I think atleast one of the students my Mum worked with had Williams syndrome.

[choirgirl]

I do think you have a musical voice Firemonkey!

I generally think that some can learn to act neurotypical enough to get by but it is a huge cognitive load. I did see a comment on an autism in girls video from a young man who said he learnt to mask, but he didn't start doing it till his mid to late teens, so he was consciously aware he was doing it and that it would be a useful thing to do.

[limey123]

^ Look on Google, YouTube and Amazon and there now seems to be a(n) (ever-growing) bunch of resources for women/girls with autism or who suspect they have it. Does this mean more are now being IDed? Dunno, but it's a noticeable trend.

[choirgirl]

^You're right. Ever since I started wondering about four years ago, there has been a huge increase.

[limey123]

Btw, I recently had an Adult Autism Assessment and am now awaiting a possible diagnosis.

[choirgirl]

Cool! I mean, not cool, but you know, well done for making that happen. Did you go through your GP?

[limey123]

^ Nah, I went the private route. Costly, but, well, I didn't want to bother my GP with it. Besides, I wanted a fairly prompt answer.

[choirgirl]

How much are we talking?

[firemonkey]

It will be a good day for those on the spectrum when getting assessed quickly is not dependent , for many, on going down the private route

[limey123]

Originally Posted by choirgirl

How much are we talking?

GBP 1000 - this seems to be a ballpark average for these things, from what I have seen.

[Dougella]

^

[choirgirl]

^^Thanks. Ah yes, I thought so. Actually I thought it was £800, but I can't remember if that was for autism or ADHD. It's not money you find while cleaning your room, that's for sure.
That is not my only barrier. My dad will have to be involved and that will give him carte blanche to be difficult, so that is why I don't want to do it while I am living here. Hm.

[limey123]

^ My father came with me to the interviews and answered the clinician's questions about my early childhood. And my sister answered the Relative's Questionnaire. Both were very helpful!

Sorry to read you think your father may not be entirely cooperative

[firemonkey]

My father lives in the States . I mentioned I was going for an assessment , and sent him some links . His verdict was that there was nothing about me that suggested I was on the spectrum. I didn't press him further .

My sister has suspected for years I'm dyspraxic , and gave me a high score for the RAADS. She provided a letter . Being 3 years and 7 months younger than me she could only provide info from when I was or so . My stepdaughter who has known me since just before her 10 birthday filled out a questionnaire .

It was decided that despite no early childhood info that the info there was strongly indicated that there were problems from a very young age .

[limey123]

^ Especially if your sis is somewhat older than you she could provide some reliable testimony.

[choirgirl]

My sister is younger than me. I think my dad may have to be involved, but it's interesting there's two of you that got diagnosed without parental input. Unfortunately everyone else who knew me well as a young child is long dead.

[firemonkey]

Received links to 2 surveys re Aphantasia via imagery lab at Sussex university .

https://www.syntoolkit.org/studies/f...imrose-3/start has a section that asks AQ (autism quotient) questions . Looks like they're looking at whether there is a link between aphantasia and the autism spectrum .

[choirgirl]

I've got to stop vanity posting in this thread because I'm actually beginning to annoy myself now, let alone the rest of you, but I think I have ASD AND ADHD. It would explain a lot.