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.

Re "does diagnosis help" - god yes.

Imagine that you don't really like food, never have. It all sort of tastes like ash. You eat anyway and get on with it but can't understand how everyone else fakes it so well.

One day you find out that your sense of taste is somehow broken. It's not that you're dumb and everyone else is brilliant. You've always assumed you're a failure, and that everyone else is just heroically pretending to enjoy the stuff while you can't take it.

But actually you literally have an entirely different experience from most people: you're not a failure, you're not some weirdo who is being difficult for the sake of it, you actually do damn well avoiding food poisoning considering you can't tell the difference between food in date and that's gone off.

It's not "you", it's your body.

... does that help at all?

I'd bet money it was "eye contact" . Complete bullshit and outdated stereotype.

The benefit of a diagnosis is that it explains why you feel,do things, react etc. differently. It's because the brain works differently. Not less, not badly, not wrong, just differently. I like the console disc analogy a lot. Put a game disc in a random console and it won't fit. It won't work.Even if it does work,it might skip,there will be glitches etc. That doesn't mean there's anything wrong with the disc. It's not faulty or scratched or broken or useless.

Targeted therapy can help with coping mechanisms or comorbidities like anxiety but it is not a cure or a fix for autism.

If the child could:

Make eye contact
Run away when others invade their space (you can be face to face with an autistic person and they will not realise that you are "in their face" - personal space means nothing.
Have a lack of empathy - but still "Oh Mum, your favourite mug is broken, that is awful"

I don't know why I am posting, I could go on and on all night and into next week. When you have a child with Autism you just cope, adapt and get on with it because there is no help out there.

IMO, “high functioning autism” means you experience my Autism mildly.

Yes it’s a spectrum. All Autistic people are on there somewhere, everyone is different, everyone has different strengths and weaknesses. However, NTs aren’t on the spectrum at all. I blame Simon Baron-Cohen for this. He’s gone on record saying “Everyone is a bit Autistic” and he’s meant to be an expert!
In terms of diagnosis vs therapy….I’d had loads of therapy in the past. They helped me identify the “what” of my weaknesses but not the “why”. So I blamed myself for being rubbish. For being disorganised, for not having many friends, for getting lost, for not having as much energy as everyone else…I spent my life wondering why I wasn’t “normal”. I realised I was probably Autistic in my early 30s (thanks to a MN thread!). I needed to know for sure though. I wasn’t happy to self-diagnose. When I was diagnosed, I cried with relief. I finally had an answer to why I was different. It’s several years down the line and I’m so happy I know. I’ve started being kinder to myself because I understand who I am, what I need and I am learning how to ask for the help I need. That’s why diagnosis is so important. I’ve gone from hating that side of me to embracing it.

I taught DD2 eye contact by saying "We look at the lollipop lady, smile, then we can look away." We practiced every day on the way to/from school. Then the paediatrician didn't want to refer her on because she had eye contact, etc. She was finally diagnosed at 11.

@Lougle

I taught DD2 eye contact by saying "We look at the lollipop lady, smile, then we can look away." We practiced every day on the way to/from school. Then the paediatrician didn't want to refer her on because she had eye contact, etc. She was finally diagnosed at 11.

I recognise these sorts of conversations!

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?

@ThePontiacBandit - that is so well written and also so sad. I wish I had the courage to be diagnosed. I just think all the time I am (almost) coping I will carry on.

I am also very lucky to have a massively understanding Boss who does not mind me working from home, coming in late etc as long as I do my job. This helps me an awful lot.

ThePontiacBandit

How do you embrace it?

I got diagnosed literally yesterday.
Do any of you know of a womens community online?

@coodawoodashooda

And, when experts say, 'the child needs a diagnosis because they need a better understanding of themselves,' what exactly are they referring to? I cant see why a neuro diverse person or a neuro typical personal wouldn't all need to have a deeper understanding of themselves.

I don't know about diagnosis in children, but I do know about me. As I said to my GP only a few weeks ago (who was assessing me prior to a referral): "Well it would explain a lot".

I have no idea what the trainer said, but I suspect he was wrong.

This.

No, therapy wouldn’t have the same effect, I’m not sure why you think it might? It wouldn’t tell someone how they are wired and help them understand why they react in certain ways or feel different?

I am autistic with ADHD. I wasn't diagnosed until I was 37. To the person who said we wouldn't be diagnosed unless we were showing communication challenges or repetitive patterns, I am afraid that isn't true, I didn't show either.

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. Just because society and your expectations say they should make eye contact doesn't mean it is the right thing to do for them, that is a very ableist way of looking at the world and is like behavioural therapy which is really disliked by the autistic community. Just because neurotypical people don't think brushing hair can be painful doesn't mean it isn't for your child.

I was diagnosed late on, I have an autistic child who is growing up where we are very open about who we are. Our explanation has been that different people have different brains just like people have different coloured hair. His brain doesn't like loud noises or sticky things but is amazing at climbing and working things out, my brain means sometimes I need time to myself because there are too many noises and I need my brain to calm down.

I have had a job all my life, I have a very successful career, I am social, my networking skills are very good, I am over empathic to a point where I get upset and sad at ridiculous things on tv.

Autistic people mostly don't like using functioning labels such as lower/higher and the now not diagnosed Asperger's. This is because it takes away from the incredibly different ways we experience the world and face challenges in it. Someone could be non-verbal, have low motor function yet hold 3 phds and run rings round most of us mentally, yet society would call them low functioning and treat them as such because they don't see past the outward appearance. Simultaneously no one sees the challenges I face, I would be considered high functioning in old terminology yet I face daily challenges. We are all disabled purely because the word disabled means that the world around us is not designed or adapted for us.

I do this advocacy and work as part of my day job. There are so many things for people to learn about neurodiversity and being neurodivergent. First stop should always be the adult voices, ask questions, hear what they are saying, they are your child grown up. Yes some of us may not be as diplomatic as you would like, yes we make you uncomfortable or tell you what you are doing is wrong, we do it to help teach, to make sure those without a voice or who can't explain yet are heard.

If anyone is interested, this is a good article on autism and empathy.

journals.sagepub.com/doi/full/10.1177/1362361319883506

It's not the easiest read but I found it really interesting, especially the research around empathy between people with autism being 'better' than between people with autism and neurotypicals.

@Aisforharlot

I got diagnosed literally yesterday. Do any of you know of a womens community online?

On Facebook there are a few, mums on the spectrum, autism inclusivity is great for hearing and learning from adult voices, neurodiverse Uk. I generally wouldn't recommend autism friendly Uk as it is more parents of than autistic voices which means a lot of the information isn't ideal. Autism late diagnosis support is another along with autistic safer space.

My diagnosis validates me as a person,

I am an autistic person, I am not a failure.

High functioning just means you have an IQ over 70, anyone using it to mean anything else doesn’t understand the meaning of the term. It is very pertinent for people who appear to be low functioning but actually have higher IQs.

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?

@5zeds

High functioning just means you have an IQ over 70, anyone using it to mean anything else doesn’t understand the meaning of the term. It is very pertinent for people who appear to be low functioning but actually have higher IQs.

Yea that’s why I am happy I was diagnosed with Aspergers, when that dx was still available, as the distinction between Aspergers and Autism then was whether there were speech and language difficulties or not, which, for me, was a useful delineation.

@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?

No it’s much more profound and pervasive than imposter syndrome.

"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.

@behindanothername this is diagnostic criteria, - it’s all about social communication and restrictive and repetitive interests - www.cdc.gov/ncbddd/autism/hcp-dsm.html

The tricky thing is recognising what those look like when so many neurodiverse people, particularly women and girls, are so incredibly good at masking it.

The restrictive and repetitive interests bit could be so incredibly different in different people - it might be a limited diet, it might be a hyper focus on hobbies, it might be a need for routine, it might be anxiety around changes of plans, it might be stimming, it might be subtle sensory difficulties like needing to cut labels out of clothes etc. The brilliant thing is though that so many high functioning adults can channel those restrictive and repetitive interests for good and be truely passionate about their jobs, hobbies or interests.

@TeenMinusTests

I have no idea what the trainer said, but I suspect he was wrong.

This. There are outdated views that people with autism aren't empathetic/can't lie/never make eye contact. Generalisations aren't helpful.

A diagnosis is often useful in helping someone understand why the world can seem so hard, can aid self acceptance etc.

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?

@coodawoodashooda

Tgis is very helpful. Thank you. The part i cant fathom is that if you hadn't had a diagnosis but instead had therapy; through the therapy youd come to the conclusion that you had various strengths and weaknesses. Would that not have served the same purpose?

No.

I got diagnosed at 40. The previous decade I spent thousands of pounds on different therapies. Still found that I was struggling with the same stuff. Turns out that you can cure autism with therapy.