To ask questions about autism.

[coodawoodashooda]

About 10 years ago i was in a meeting about autism. The leader said something like, 'if the child could......... then they didnt have autism. What was the quality that was being referred to? Was it empathy? I cant remember and for various personal reasons id really like to know.

CAN'T

Autism is a massive spectrum and everybody on it is impacted to some degree, you would have to be to be diagnosed
However some people are massively impacted and some are not and there is everything in between

@coodawoodashooda

Okay. And please dont be harsh on me if this is offensive, im not trying to be controversial but i really want to understand the benefit of a diagnosis. So, you remember there was a thread a few weeks ago about imposter syndrome? Basically everyone felt that we were all experiencing a sense of feeling odd or out of sorts from our community. I guess im saying, do we not all feel, 'odd' in our own way? I mean, how many people laughing at the in joke actually thought it was funny?

Right forget the “joke” part of the analogy for a minute. Just concentrate on what she said about foreign language.

It’s like everyone else is speaking a slightly different dialect to the one you speak and understand. So you’re having to work quite hard to follow the conversation and fill in the gaps and every now and then they all get up and react to something you didn’t catch at all and you wonder what they’re all doing. At the same time they’re all strangely illogical and overreact to things and indulge in strange pointless customs that have no real point to them, but you get that it’s their thing so you spend a lot of time playing along with silly things.

When you find out your dialect and culture is a real one with a name and there are other people like you to hang out with sometimes, and you even give birth to some, it’s an enormous relief.

@RickiTarr

Autistic people mostly don't like using functioning labels such as lower/higher and the now not diagnosed Asperger's.

Please don’t presume to speak for “most” autistic people @behindanothername - you’re not our elected representative and you’re wrong in that one. I’ve had innumerable conversations in which we all lamented the retirement of Aspergers as an available dx in the publication of the DSMV. So presumably opinion is split?

Quite I can only speak for my child who is non verbal but nobody else can speak for him

I have a dyslexic diagnosis and ds has an ADHD one.
Our diagnosis allow us to understand ourselves without the judgment that comes from failing to achieve some NT activities.

For me it means I automatically use a calculator and spellchecker because I understand it isn't just a lack of effort on my part that means I can't spell or do mental arithmetic.
As a dc unsure why I was the only kid in class unable to do basic tasks having a diagnosis was transformative to my self esteem.

For my ds it means that he understands why he needs breaks, struggles to focus sometimes and over focuses at other times as examples.

It means as his parent I can be really clear with his school what he needs to support him.
I also understand my parenting hasn't failed because he hasn't learned some skills other dc have.
It gives me a clear steer about how to parent him effectively.

I'm not speaking for anyone with an autism diagnosis but for my ND family our diagnosis are important.
Therapy wouldn't change the way either of our brains functioned.

@coodawoodashooda

Okay. And please dont be harsh on me if this is offensive, im not trying to be controversial but i really want to understand the benefit of a diagnosis. So, you remember there was a thread a few weeks ago about imposter syndrome? Basically everyone felt that we were all experiencing a sense of feeling odd or out of sorts from our community. I guess im saying, do we not all feel, 'odd' in our own way? I mean, how many people laughing at the in joke actually thought it was funny?

Ok , let's say the bones in your hand grew differently to everyone else's. You can do some things, but not others . You can't write neatly or sow no matter how much you try. There's judgement and comments sometimes even from yourself... lazy,messy,stupid. Just not trying hard enough. What is wrong with you?

You don't know. You know you're different. But you don't know why. You get told over and over again that what you can do is just not good enough. That your best is not good enough. That it's easy. If only you'd just try. They show you. Again and again. You practice again and again. You know the theory. You know how to hold that stupid pen, what moves to make, how to form the letters. You see it in your head how it should look. It never works. And you just can't understand why.

Then one day you get an xray and it shows exactly why . That it's not you. You're not stupid or lazy or not listening or trying. Your hand is different, so your handwriting will always be different and that's ok.

@Mummadeze

I don’t know if my DD is autistic. She is 12 and very shy and anxious and does display traits that might be indicative of autism. She finds comfort in fiddling with something at all times, goes into dream world’s, and often walks behind me. She has intrusive thoughts which I think is OCD so I don’t know if that is relevant. She does struggle to make eye contact and to make small talk with people she doesn’t know very well. But I am not sure how to tell the difference between general anxiety and autism. Her counsellor at secondary school has very recently suggested we investigate further but I am unsure whether to go down that road again as she had an assessment at primary school and autism was not diagnosed. To be honest, I find it a bit worrying and confusing, but above all want her to be happy. Does anyone have any advice?

@Mummadeze if someone is suggesting referral for assessment, I would do it. It will take a couple of years to get to the top of the list anyway. Sometimes children don't score highly enough when they're young, but as they grow their difficulties become more obvious. DD2 was 11 by the time she was diagnosed and at first she was doing well in her ADOS (I sat in because she wouldn't go without me). As they moved from concrete tasks to more abstract ones, her difficulties became obvious.

DD1 (15) has SN and has always gone to special school. She's finally being assessed for ASD soonish... Just waiting for a date.

As a school child I struggled in classes, went to extra English/maths sessions, couldn’t organise myself, lived in a chaotic mess, couldn’t spell or remember phone numbers or appointments. I could never put my ideas on paper. I felt extremely thick next to my classmates and second rate to my siblings who were high achievers. About 10 years ago I was tested and found to be dyslexic. On reviving dyslexia advice I was able to implement strategies to help me - using technology and simple processes. As a result I can write professional documents/reports, live in a stream lined home,

@x2boys

Autism is a massive spectrum and everybody on it is impacted to some degree, you would have to be to be diagnosed However some people are massively impacted and some are not and there is everything in between

"Some are not" is a cop out.

"Some are not" refers to how the ones around them experience their autism.

"Some are not" translates to "I'm not affected to much by their presence ".

@Orf1abc

It’s a spectrum that everyone is on somewhere.

No, not everyone is on the spectrum. You're either autistic or you're not.

50% of population are on the spectrum somewhere a psychiatric told me

OP are you winding us all up?

But some people do claim they are not impacted by there autism at all this is not me saying this, this is some people I'm just saying it's a spectrum my child is massively impacted others are not and there is everything in between

Dinah Murray died today.

She did amazing work explaining autism in terms of what it is (rather than just as a collection of things that autistic people often find hard). A lot of the ‘deficit based models’ that get taught end up both confusing and depressing - so I have empathy for the OP.

I’ll look up the article that describes it properly - but here’s the first of a series of illustrations my kid did inspired by the work.

This comic strip explanation of autism is excellent for understanding the idea of the spectrum.

themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

@x2boys

But some people do claim they are not impacted by there autism at all this is not me saying this, this is some people I'm just saying it's a spectrum my child is massively impacted others are not and there is everything in between

I hope you don’t mean me and people like me who say wouldn’t want to be NT. I would hate to think I’m adding to the misunderstandings.

I wouldn’t change for ££££s, and I know others who feel similarly. It doesn’t mean we’re not impacted by living in an NT society.

Article explaining Monotropism theory of autism

thepsychologist.bps.org.uk/volume-32/august-2019/me-and-monotropism-unified-theory-autism

It both explains a lot of autistic traits (e.g. repetitive behaviours), debunks some common misconceptions and makes it clearly silly to say things like ‘if he makes eye contact he can’t be autistic’.

That’s a really good link @SuperSleepyBaby

@Orf1abc

For females, a diagnosis can result in greater self acceptance, and less masking. Masking for years on end is exhausting.

Yes it is absolutely exhausting. If you get a diagnosis of autism it can help you realise why you find certain situations/ conditions upsetting. I found it so liberating finding out when I was 50.

@Lougle

"To the person asking their child to make eye contact with the lollipop lady, please be aware forcing your autistic children into uncomfortable behaviours can cause masking which is really not a good idea."

It has given her a tool that allows her to blend in more. For her, that is crucial, because the thing she hates more than anything else is to be 'seen'. She doesn't actually make eye contact. She looks at somewhere near the eyes but not at the eyes. Still, it's enough that it stops people noticing.

Personally I don't think you are doing anything wrong at all. I have aspergers/autism (I mostly say aspergers when I'm telling people as the image it conjures up is a better fit for me IME), I work full time, have a fairly decent career - and like it or not part of this is because I have learned appropriate behaviours which people expect to see. I know what is expected in a job interview, or in a client meeting, and I do it. I now understand that those behaviours will drain me if I do them for long periods and that I need to build in breaks and downtime. But I live in an NT world and I would do myself no favours overall by not fitting in with the social expectations where I understand them and am able to do so.

I suspect my DD is autistic although I haven't pursued diagnosis at this point. But I teach her strategies to cope in the world we live in ; sometimes that's recognising when you need noise cancelling headphones and space, others it's that if you look at the bridge of someone's nose they think it's eye contact and most people prefer that.

OP - do you think there is a downside to a diagnosis?

A diagnosis doesn’t give you autism it just lets you know you do have it. Then you have a better understanding about why you experience the world a bit differently to most other people - and can hopefully work out strategies to help you with things you find difficult.

I wish people would stop using 'the spectrum' to describe how autistic someone is. It's not an end to end with autistic people lined up in order of their difficulties.

And to answer your question about therapy OP, no you cannot therapy the autism out of someone.

@Orf1abc

For females, a diagnosis can result in greater self acceptance, and less masking. Masking for years on end is exhausting.

This. I was diagnosed as an adult and a lot of my masking just fell away bit by bit. Despite the diagnosis giving me an explanation for many things I almost had an emotional breakdown over it. I wanted it. I had obsessed over it for years. When I finally got it though and was faced with the reality that actually there is a lot I struggle with and always will, I found it hard. I well last that stage and feel absolutely at home with it, particularly because of the masking being completely exhausting.

@coodawoodashooda You haven’t told us why you’re so interesting yet so uninformed. Is there a personal angle you have on this? Your DC?

You have everyone trying hard to explain to you, and sharing personal stories, yet you’re staying quite enigmatic and opaque in your motivation.

People with autism can't point - speech therapist told me this. Oh don't worry he can point he doesn't have autism.

No not at all @RicciTarr