Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

No. Not more serious. It means people have to be treated as individuals because there is not one presentation of autism. Needs have to be assessed, rather than be assumed based on a label.

But @BadNomad there was always a range of presentations within the autism diagnosis. They were previously described as LFA and HFA. Are you saying it’s helpful for Aspergics for people not to know what to expect?

I agree, I also cringe a bit at the whole 'masking' clause. I mean if you are capable of masking you are already doing a damn sight better than those who are totally incapable of masking at all. Not saying its not exhausting but come on, thats the difference between you holding a career and a family down...and well, not.

Yes. People shouldn't have any expectations for people they don't know. There shouldn't be any bias. You shouldn't have any assumption about a person based on them being diagnoses with autism. You need to learn about their specific personality and their specific needs. HFA and LFA doesn't work then or now.

I didn't realise that would be the case. We were put forward for it as we have already taken part I'm the 100000 genome project but haven't heard anything about it since it was in the news when it was paused.

This shows though that the profound group are missing out on being included in research.

Everyone with ASD has different needs.

According the Goldsmiths university 80% of adults with Asperger Syndrome haven’t been able to secure long term employment. And according to NAS only 32% of autistic adults are in any kind of paid employment and only 16% are working full time. So there are a significant number of autistic adults who can mask who aren’t in paid employment or are but not full time or not in a career.

Yup we're doing a damn sight better until we have a fucking meltdown

Ah this was the earlier research that they were doing for a decade or so - when you could register to be part of a research panel and they would invite you to take part in relevant research projects as they came up.

I don’t know about the more recent one - I looked but thought it was problematic so didn’t pursue. I would hope they have widened access!

'Cringe' like what, it's embarrassing? Not real? Not necessary?

I feel you may have just read the op and posted your thoughts but the discussion has moved on to sharing a space where NT parents and ND people have been trying to find some agreement and courteous discourse. Jumping in with some random unrelated comment is really pointless.

I have a question about masking if I could ask please?

The programme the other evening showed a lady that would use repetitive movements (rock back anf forth) and would shut down/ not be able to communicate when she was at home and her authentic self. It later showed that she'd had a child and it stated she was married. Would she have been able to give consent when shut down or in order to have that side of a relationship would she have needed to mask? Or is there some inbetween that she would have or times where she would be rested or regulated enough to be herself without masking or needing to shut down/ regulate. This wasn't very clear on the programme.

With her unmasking at home does this mean masking can be used as needed if the person has enough energy?

Before I get jumped on, I'm genuinely trying to understand this aspect as it's something our family haven't experienced. A anonymous sm post seems a good place to ask .

I didn’t say learning disability was part of autism, I said learning disability and autism are symptoms of various conditions. Just like a fever is not part of a cough but a fever and a cough are symptoms of flu.

You are asking people to make assumptions when you disclose you are autistic, I think what you are saying is the assumption should be as vague as possible so all conclusions beyond ND are suspended until that individual is assessed by whoever they are interacting with?
How do we find out what services are for which group then?
How do we find out if subgroups of the diagnosed are being horrendously failed?
How do we know how to plan?
If parts of the community are growing?
If parts of the diagnosed respond better to one treatment or another?
How do we learn anything at all?
How do we avoid unqualified unobservant people demanding information they don’t know how to deal with and giving totally inadequate or damaging intervention?

That's the problem with masking - maybe there is some element of control over it for some people, but my dc at least have very few skills at knowing when they need to retreat because they're on the verge of a meltdown from it, and autistic burnouts can happen for many reasons but one is the day to day stress of trying to constantly remember the script and fit in.

MS schools have set time tables you have to endure, little scope for flexible downtime.

I haven't watched the show so I'm not sure what was the lead up to that particular lady having a shutdown, other than it being because she was overloaded and overwhelmed. How do you mean about consent? As in can she consent to sex while in a shutdown?

I can only speak from my point of view in regard to masking. Masking is like having to speak another language. It takes a while to understand what people are saying, and then I have to carefully choose words, body language, and facial expressions to present back. While under pressure and anxiety of getting it right. It's something I do for other people so we can communicate. So I can appear normal. So I can survive being outside. It's an automatic thing when around people who aren't my "safe people". It's mentally and physically exhausting.

Home is my safe space. My partner is my safe person. There isn't a need to mask around him because he gets me. Shutdowns happen when that mental and physical effort becomes overwhelming or when I'm now free to let go of the mask. I don't seem to have the ability to process the comedown from that build up. I get back home and fall apart. My mind just, well, shuts down. (When I was a child, coming home from school, as soon as I got to the end of my street I would start crying then be in full hysterics by the time I got inside. My mum couldn't understand it and I couldn't explain it. I couldn't even speak any more at that point, just moan, then eventually go mute.) I don't rock (but I used to headbang and hum as a child), I tend to pace and scratch my body then eventually just sit down and cry silently.

I'm not asking anyone to make assumptions about me when I say I have autism. In fact, it's quite rude of them to do so. Just look at how many people who come out with shite like autistic people don't feel empathy, autistics have no theory of mind, people with autism are rigid thinkers, autistics look special. All comments on this thread btw.

How do we find out what services are for which group then? The same way you do now. Based on individual needs.
How do we find out if subgroups of the diagnosed are being horrendously failed? The same way you do now.
How do we know how to plan? Who is "we"? Plan what?
If parts of the community are growing? The autism community? I don't see the relevance or importance of this. This is just a bunch of people.
If parts of the diagnosed respond better to one treatment or another? Again, this is individual. Not all people within a group will respond to treatments
How do we learn anything at all? You need labels to be able to learn?
How do we avoid unqualified unobservant people demanding information they don’t know how to deal with and giving totally inadequate or damaging intervention? Unqualified, unobservant people shouldn't be providing interventions.

It wasn’t only Aspergers that was combined with Autism, Persuasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) was merged in too. I am not sure how common that diagnosis was in the UK though.

"I mean if you are capable of masking you are already doing a damn sight better than those who are totally incapable of masking at all"

Lots of people with autism and severe learning disability learn to mask to some extent in that they learn to hold how they are feeling in or can moderate behaviours for amounts of time.

@BadNomad assessment of rigidity of thinking is part of the diagnosis, it's part of ghe triad of impairments. Theory of mind plays a big part in social communication and should be looked at in assessment. I have mentioned both of these but haven't said people with autism don't have them. Severity varies as we've already discussed.

@BadNomad thank you for sharing that and answering my question.

It shouldn't be down to autistic people and parents of autistic children to make other people understand. If people want to understand there is nothing stopping them.

I’ve seen this elsewhere, for other minority groups too. It ignores the fact that most people don’t actually care or have enough other more pressing matters to worry about. Why should they go to the effort of understanding? What is in it for them? I mean how much time have you spent learning about the problems of living with pernicious anaemia? Or other conditions that don’t impact your daily life? If you want people to care, to make adjustments, to be inclusive, to offer employment, you have to make an effort to teach them.

Not everyone who throws that out knows what it actually means. They use it when someone they who they know is autistic doesn't agree with them. As in "you're wrong, but you won't accept that because you are autistic".

That's kind of my point. People are saying they want autism to be changed because people think autism means gifted, a superpower, whatever, so if it was changed to "severe autism" then people would understand better. But they won't. People who don't care to know what autism is aren't going to care what severe autism is. So why are people worrying about those people? Changing the term isn't going to make ignorant people understand any better.

So what DO you think diagnosis is for @BadNomad ? 😮

can only speak from my point of view in regard to masking. Masking is like having to speak another language. It takes a while to understand what people are saying, and then I have to carefully choose words, body language, and facial expressions to present back. While under pressure and anxiety of getting it right. It's something I do for other people so we can communicate. So I can appear normal. So I can survive being outside. It's an automatic thing when around people who aren't my "safe people". It's mentally and physically exhausting.

Yes, it's hiding your feelings. I wouldn't have sex with my husband to pretend to fit in, that's weird. I may have had too much to drink or one night stands ti pretend to fit in with eg uni or club culture in the past.

Masking isn’t good. Masking is what leads to a lot of the mental health issues that are comorbid with autism I believe.

for anyone unsure what the impact of masking is look at the coke bottle effect. It’s real and it’s horrible.

ds masks at school, just before half term he had had a bad day and ended up in full blown screaming shouting self harming meltdown from getting in the car at 3pm until just gone 6pm. For him it also has the added bonus of triggering two of his medical conditions!

when I mask too much i end up mentally and physically exhausted. To the point I literally can’t function.