Asking questions about autism

[joobleydoo]

I'm sad the thread tonight (from a worried mum looking for support around the possibility her son is autistic) was deleted.

I think some of the phrasing was clumsy but I don't think she meant to cause anyone any offence, and I'm sad we couldn't find a better way to work through it than the thread being deleted.

As a parent of two children diagnosed autistic, and awaiting autism assessment for myself, I want people to be free to ask questions about autism.

I do too (as a mum of an autistic daughter and a recently diagnosed autistic adult myself) because talking about it, breaking down the stereotypes and ensuring people have better understanding can only be a good thing.

But I have noticed an awful lot of autism threads, way more than usual, on here the past week or so. Some of which have been quite inflammatory. I know one at least was a PBP.

Don't know if there's some sort of agenda, or if maybe just more people are struggling over the holidays. But it seems odd to me.

I agree, discussion is essential. To that end, imo, assumption that arguments are made in good faith can be helpful. Even if they aren't, a logical/calm response from me takes the heat out of the discussion and gives the other party a chance to shift position without embarrassment.

I suspect I have autism myself though, tbh, and I tend to just assume people mean what they are saying! I've learned to suspect over time, but have also realised that my previous approach of genuine innocence often seemed to be quite effective in perpetuating good productive discussion

@Immunetypegoblin

I suspect I have autism myself though, tbh, and I tend to just assume people mean what they are saying! I've learned to suspect over time, but have also realised that my previous approach of genuine innocence often seemed to be quite effective in perpetuating good productive discussion

Oh my goodness you have just described me too! Sometimes it takes me hours, days or weeks to realise someone intended to be rude to me, but because I took their words literally I just carried on pleasantly with the discussion and yes, that seems to keep things moving!

@sparklemagicsnow

I do too (as a mum of an autistic daughter and a recently diagnosed autistic adult myself) because talking about it, breaking down the stereotypes and ensuring people have better understanding can only be a good thing.

But I have noticed an awful lot of autism threads, way more than usual, on here the past week or so. Some of which have been quite inflammatory. I know one at least was a PBP.

Don't know if there's some sort of agenda, or if maybe just more people are struggling over the holidays. But it seems odd to me.

That's interesting, I hadn't realised there were lots of threads discussing autism recently.

What's PBP please?

One recently discovered in autistic at 43, so much in my life makes sense now. It needs to be spoken about more.

I am delighted it's not just me!

I agree - I find threads similar to trans threads where people are trying to ‘trip people up’ instead of just having an open discussion about Autism.

I think Autism needs to be discussed and we shouldn't get hung up on the correct terminology. Just correct people and move on.
I'm wondering if Autism has been the cause of my miserable, difficult life and I'm finding that very hard to come to terms with. I don't present anything like a stereotypical Autistic person. I would love to have discussions with similar people.

I think we do need to try and talk carefully and sensitively to each other, remembering that our own experiences of autism may differ hugely to others'.

And we need to say when something hurts or doesn't sit right.

But hopefully we can do that without needing to shut conversations down completely?

I feel for the mum tonight who was reaching out in the first part of her possible journey with autism in her family ... It's rubbish that she is closed down when she is just starting to speak and explore.

Maybe part of the complexity is that some (?many?) of us have autistic children and then also begin the journey of assessment for ourselves... so conversions about autism range very wide because some of us are talking about our kids and some about ourselves.

@missbunnyrabbit Hello! There is a MNetters with SN board you could try ...

It seems to be the phrase high functioning people take offence to. It's actually on my DD's diagnosis! I'm not sure how I'm meant to describe to a complete stranger that my dd is mainstream educated, now at university but diagnosed with persuasive developmental disorder (now part of asd) and dyspraxia 20 years ago without the hf label because she is compared to my friends ds who at same age requires around the clock supervision! Giving them exactly the same diagnosis without an extra description isn't helpful when explaining their condition.

What's PBP please?

Previously banned poster....... someone who is known to just start threads to goad people

I haven't noticed more threads about ASD here, but I've been thinking about it a lot more the last week or so. As it is Xmas and New Year, all our usual routines are shot to pieces which my teens have found very distressing and this ruins their sleep. It's the not sleeping that I struggle with the most. My kids are a delight in so many ways but can't wait for Christmas to be over so they can get their lives back on track.

When my kids were little, I went to support groups and the parents of older children were my advisers and lifelines. I think that is all gone with COVID so we should support each other however we can.

@joobleydoo

I think we do need to try and talk carefully and sensitively to each other, remembering that our own experiences of autism may differ hugely to others'.

And we need to say when something hurts or doesn't sit right.

But hopefully we can do that without needing to shut conversations down completely?

I feel for the mum tonight who was reaching out in the first part of her possible journey with autism in her family ... It's rubbish that she is closed down when she is just starting to speak and explore.

I thought whichever mod decided to take that thread down used very poor judgement.

I don’t understand how a mother looking for help, support and HOPE during a very worrying time could be told in good faith that that post was offensive. What nonsense.

I have a dd with ASD. She’s amazing. Do I know that she will experience challenges as she grows up, and as an adult? Absolutely. But I’ll go insane if I don’t look for the hope that she’ll grow up happy and with some independence.

But I for one am getting a bit fed up of the doom-mongers on these kind of threads who are all too keen on reminding parents who are still very new to the whole ASD universe that it’s the worst thing ever.

We are using Levels 1 - 3 rather than higher/lower functioning to describe the ASD now.

There are different levels of autism that can be easily detected. The levels can be categorised into three levels. Patients of different levels need different treatment to improve the functionality of the patients.

Level 1: Requires Support
Social communication has noticeable impairments. Under this level, a patient may be able to talk in proper/meaningful sentences. However, interactions are missed.
Trouble to initiate social interactions.
There is a lack of ‘to and fro’ flow of conversation between people.
Inability to socialise and make friends.
Inability to organise and strategies themselves.

Level 2: Require Substantial Support
A deficit with verbal/nonverbal communication skills.
Limited or no social interaction and no response to people trying to interact with them
Interaction is possible up to a limit with non-verbal communication
Nervousness and shyness when watched by unfamiliar faces
reduced ability to function and participate in their daily activities
Repetitive behaviour is obvious

Level 3: Require Very Significant Support
Patients have severe problems with verbal or nonverbal communication
Are less likely to reciprocate to social interaction
Hardly responds to people trying to socially interact with them
Strong or extreme restrictive /repetitive behaviours

I know the 3 levels are supposed to be helpful but I feel suspicious of them, trying to put my finger on why ...

I remember reading in an online manual for DLA employees (whose job was to read and assess DLA applications) that children with a description of level 1 would generally not get DLA.

Ie I have always worried that a child being marked Level 1 will get zero help.

Or a child at Level 3 only have low expectations for them and not encouraged to become the fullest people they can be.

@Kite22

What's PBP please?

Previously banned poster....... someone who is known to just start threads to goad people

Thanks!

Its a real shame she couldnt get support.

The thread was already banned when I clicked on it so I have no idea what OP said or asked for.

In my experience threads about autism(and other SEN's) tend to get very emotional and heated , with hurt feelings or accusations from parents, people that do have autism, their siblings. Because everyone will be affected in a different way. People with autism take it very personally and can get very upset when parents have threads/comments about how awful it all is. Parents get very upset when it's all described in a romanticised way (Sheldon Cooper type, superpower etc) . Siblings sometimes are resentful of their parents, their sibling with autism or sometimes both.

Sometimes there's a sad and often heartbreaking competition of "my child is more significantly disabled", where parents of kids with HFA(yes I know, old term) get jumped on because their kids needs aren't as bad and in some way they have to almost justify why they/their children struggle anyways.

Then you have the usual trolls and shit stirrers that go all "back in my day", "this doesn't exist", "they just need parenting", "it's all done for benefits ". Or the well meaning, but not very helpful of the Holland poem type.

I have no idea which way the thread was going , but I suspect quite a few people got their feelings spared while already struggling and dealing with enough shit. I might be completely off the mark. Either way, I hope that poster finds the support ,advice and help she needs either here on a different thread/board or somewhere else.

Completely agree OP. I posted in support of the OP on that other thread - stating exactly what you have - we need to talk. There is far too much misunderstanding and division. I would far rather clumsy wording but clarifying a misunderstanding or providing support than to keep everything sanitised but useless.

The fact MN allow threads posted by disgruntled partners which discuss autistic people in the most ableist ways yet shut down a parent of an autistic child is quite alarming (and contradictory in my view)

We need to talk.

@ldontWanna it's interesting you've mentioned Sheldon Cooper. I've only recently started watching TBBT and I just can't get on with it. Mainly because of Sheldon. It is like watching the male version of my mother. But it wasn't funny living with her, it was hell.

We're going through the assessment process with DS1 and it has been an eye-opening experience for myself regarding my family. My mum has never been diagnosed and wouldn't consider being assessed now. I think my siblings and I are all at various points on the spectrum.

It is an emotional process to deal with. I feel quite sad that someone else going through similar has been shut down.

TBF there does seem to be a frequent troll who posts about autism, I didn’t see this exact post but there is a poster who often posts about her autistic child in a pram and the threads always get deleted as it’s a PBP

Even the levels make me uneasy. My dc would fall into Level 1 so that would make people think they have 'mild' autism.

I'm here to tell you that autism is not mild for anyone. It's life altering, life complicating, overwhelming, debilitating, exhausting, anxiety inducing and a million other things. My dc are also very intelligent, funny, caring, incredibly creative, resourceful and hard working,. They do both struggle to work within the boundaries of in a world of neurotypical people where all the rules are made by people not like them.

I've said this before on another thread but autistic people who are described as HF or having 'mild' autism are the ones who make neurotypical people less uncomfortable. They are the ones who can mask and make you feel they are 'normal'. However the cost to their mental health and well-being can be catastrophic.

I wouldn't change my dc for the world but do I wish they didn't have to struggle with interpreting social situations 'correctly', feeling unsure and anxious all the time. You're damn sure I do. It's not a mild condition for anyone and to suggest it is, is insulting and ignorant.

Absolutely no idea what this other thread was about but the HF term or 'mild' autism bollocks really makes me angry on my dc's behalf. It's like playing top trumps with a neurodevelopmental disability, they don't win because they score less another person - they are still stuck playing the game forever.