To find this view re autism frustrating

People with autism need social training, training in self recognition, training in self management and regulation techniques.

Careful, you will be accused of wanting to train their autism away!

Im sure I will. I dont care about that. These are the resources needed.

It cant be considered that a person has a debilitating disability but at the same time dismiss the routes to mitigating and managing some of that so that life is easier.

When people complain for example that 'CAMHS arent interested', this is the basis of therapy to some degree anyway so what is it people want exactly, for them to get better or not get better?

Well, it's definitely another interesting "challenge" regarding the words we use to describe things. As someone with what I'd consider moderate ADHD, which is disabling, it's definitely helpful to have a word that describes this type of disability and one that describes people who don't have one like it - and I have lived with plenty of people who definitely do not have either ADHD or autism. However, having also had some of the other things on the list and known others with these too, I can also see how they disable as well in a way that might be seen to make them neurologically atypical. Maybe neuro-disabled would be a better term vs nonneurodisabled? Obviously that disability comes in degrees.

I have seen some crazy online autism activists who accuse any therapy or teaching of trying to train out autism, including things like social stories or speech and language therapy. It is almost as if they think autistic children uniquely do not need support to learn or develop unlike all other children.

I know an activist late diagnosed autistic mum of an autistic child who has taken this approach with her child. Their child is now much more disabled than they would otherwise be as she believes it is entirely for society to change to fit her child. The child (now nearly adult) is autistic and would always have had difficulties. If they weren’t autistic you might refer to them as ‘spoilt’ through constant indulgence. Some people would hugely object to me saying that but being autistic doesn’t stop you from being harmed in that way too.

The terminology can be confusing.

Neurodiversity includes everyone, all types of brains. So everyone is neurodiverse in that sense.

People usually mean neurodivergent (rather than neurotypical) when they say neurodiverse, but it’s not actually the correct term.

I attended an online parenting seminar recently where the psychologist drummed that into us 😅

ETA I also hear what @Pairlesssocks is saying re neurodiversity. These concepts are all fairly recent constructs really.

Yes and yet if one suggested the child isnt disabled and autism isnt a disability because is a social issue/environmental issue and therefore autism doesnt really exist, Im sure she wouldnt like that

If it is solely for society to change and therefore her child would be 'ok' then her child doesnt have any condition do they.

Why doesn’t it exist though?

Autistic people are known to have an increased incidence of mental health issues.
OCD, the condition DS has, is more prevalent in autistic people than it is in people who don’t have autism.

Why are CAMHS or adult mental health services allowed to discriminate against autistic people in this way? The adult MH service literally said to him ‘we will not help you with your mental illness because you’re autistic’.

DS wasn’t looking for social training or training with regulation. He wants help with the hugely debilitating OCD that is ruining his life.

The mental health services should not be allowed to ignore people like him.
They should not be allowed to ignore him because he’s a more complicated case.

Surely it’s discrimination?

ABA therapy s very controversial
And whist we have never looked into it if it can help a non verbal child commnicate im not going to judge
But you get the very vocal on line advocates
Saying things the Autitistic coomunity dont agree with it
Like they have any say
And i have news for Autistic community
There is more than one Autistic community

Yes completely agree

I have no idea

Sorry I actually missed a bit of your post, with regard to the OCD

When you say he doesnt need social training/regulation work, well thats what therapy is, what help did you envisage for OCD?

OCD is often treated with a mixtue of medication, usually anti anxiety and CBT, but CBT is not thought to be hugely effective for people on the spectrum/ND

If you wanted therapy to support him with his OCD it will involve a degree of understanding yourself, your triggers, how you respond to yourself and others (call it social training and regulation work).

We’re talking at cross purposes perhaps?
When you said social training I thought you were referring to autism not OCD issues…which I think you were if you missed the ocd bit 🤔

CBT can be modified for autistic people, but it’s not provided due to lack of training/experience is what we’ve been told.

Neurodiversity just means a diversity in the way of thinking. It doesn’t imply disability. However many of the conditions I listed are disabling - for example older people can struggle hugely with new technology that is required for so much in life these days.

The main issue with the concept of neurodivergence is it is so often presented as needing to consider all ways of thinking when the people pushing it just mean autism and adhd. So it sounds like you are addressing issues and groups with disabilities when you are not.

Your last sentence is correct

'social training' can be applied to anything and anyone, so yes it is about autism and it is about mental health issues too

The most anxious of us, have a feeling of dread/fear among other things, that is often linked to how we see other people. We see other people as different, competent, able, judging us, looking at us. Its a revelation to know that actually no one is bothered by you or me, no one is looking at you or me, they're quietly getting on with their lives. To know that, to learn that lowers anxiety

Its no coicidence that anxiety in kids has gone through the roof since we developed a narrative around children that centres them all the time, that they are special and unique and different. That was done with an aim to empower and validate, what it does (in some children and some adults even) is develop this 'main character syndrome' where it can be negative in that 'Im different, I dont fit in, Im not like these people' 'no one else feels like this' or that they aggrandise and become grandiose and entitled but at the same time the pressure of thinking that you are so centred and the world revolving around you makes you think that people are focused on you all the time, that is nervewracking and frightening. Hence the increase in anxiety

The best thing we can 'train' children to understand, even if they are on the spectrum, is 'no one is looking at you, their day to day thoughts are not about you, you're just the same as everyone else, other people have these feelings and experiences and confusions and behaviours and they struggle with x, y, z'

Theres always going to be some caveats to this for people who do have signficant disabilities and differences in terms of social 'norms'. Im talking in short hand.

That in essence is social training, theres far more to it obviously Im picking on one area, theres other basic stuff like learning how to engage and be socially appropriate, but it also protects our children's MH

Social anxiety is something than can be addressed by autism services though, as deficits in or difficulties with social relationships are part of the diagnostic criteria.

Autism services don’t address other types of mental health issues or mental illness though, as they’re not part of the diagnostic criteria.
It’s then a problem that the mental health services often won’t help either if a person has autism. There’s a gap in the services, as you said earlier.

OCD is not an anxiety disorder so most of the above doesn’t actually apply to DS, though I know it does to others.

Slightly off the subject but I totally disagree with you with regards to ‘the best thing we can train children to understand’ (a sentence I find jarring in a number of ways if I’m honest) in connection to anxiety.

I am an anxious person. I have been diagnosed with an anxiety disorder. I don’t know if it’s related (hypervigilance perhaps) but I am also very good at reading people and picking up on subtle, often non-verbal, cues about what they may be thinking or feeling.

I have spent much of my life (am now middle aged) being ‘trained into understanding’ by well meaning people that I am ‘over sensitive’ and that no one is looking at me, that they’re all just getting on with their own lives and have better things things to do than make judgements about me, or anyone else.

This is complete bullshit. People are constantly making judgements about others, it’s not even intentional. People are having a multitude of thoughts at any given moment. They are looking at you and making assumptions and noticing small details and thinking and feeling things about you all the time. What we need to help children understand is that we have no control over what other people think or feel. NOT to ignore their instincts and their observations but to know that other people’s thoughts and feelings need not affect us. People will think negative things about you and that’s OK.

I honestly think that whole ‘people have got better things to do than think about you and what you’re doing’ trope is akin to gaslighting. A lot of time when you think someone is thinking about you or looking at you they probably are. The key is to understand that it’s not something you need concern yourself with. We have little control over how people feel about us so we should focus our time and energy on what we want and need and what makes us happy.

It is not just CBT for OCD, it is ERP. It is also NOT accommodating compulsions. Of course by the time it is identified as OCD not autistic rituals there are likely be many embedded compulsions that need therapy/medication to retreat from. You don’t just go cold turkey with someone but neither do you allow yourself to be drawn in further into supporting their compulsions. Accommodating compulsions embeds the obsession and the compulsion further.

Support for OCD seems to be generally appalling whether accompanied by autism or not. But the problem for CAMHS can be a lack of training that links right back to the whole silo thing of autism being a separate condition and not just a symptom of a huge number of conditions which also have other symptoms like adhd, learning disability or ocd as part of them. This results in CAMHS have someone trained on autism, another in adhd and yet another trained in OCD but hardly anyone who is able to look at the person as a whole.

Yes, that’s exactly it @Pairlesssocks.

I think different people use it to mean different things and there's a narrower and a broader meaning. I tend to assume most people use it to refer to Autism and ADHD (the narrower meaning)unless they specifically say otherwise and that assumption is usually correct from what they go on to say. People using the term in that way do usually, in my experience, see it as referring to medical conditions at the very least, if not disability. But yes, there are exceptions and it is getting both frustrating and confusing.

It is called forced teaming - attaching your cause to a wider group to give it extra weight but then pushing just your own cause meaning the wider group are ignored.

We had a good example of the disability vs difference this week. Both my dd and I have the type of ASD that would previously had been labeled aspergers.

We were at my DD’s specialist appointment. She took my daughter’s response that she could not provide precise information about a condition to mean it was not bothering her much. I had to correct the doctor and point out that the doctor had asked if the condition had flared x times in y days and my daughter was unable to provide exact dates to prove that cutoff and had thus answered precisely. That did not mean the condition was not still a problem. It meant she could not provide precise data. It might have taken slightly more than Y days to have X number of flares.

As a 50 something woman who has been doing this for a long time, I simply stated that the doctor was showing a neurotypical bias. She knew that my daughter has ASD and should know better than to interpret responses in this way.

Thus the question becomes, is it a disability or a difference in this instance. With a better trained doctor, this would not have been a problem at all. I would not have had to fight to get my dd proper care.

Hmm, I don't know. Maybe sometimes. But my understanding was that the term was originally coined to mean Autism and ADHD specifically and that was the original meaning. Others have pushed to expand it since then but they tend to want the broader meaning to stand in all contexts as they're only included by that broader meaning. It's an interesting term though. I can see how it might apply to all sorts of things.

It’s Classic Kanners Autism and I will only ever refer to my 35 years old son as having classic kanners autism. It describes him to a T which is something none of the new fangled terms have ever managed to do. Then there’s also his Tourette’s syndrome, his bipolar disorder and his epilepsy but even those three conditions together don’t manage to take away from his classic Kenner’s autism. There really is nothing like classic Kenner’s Autism.

Its correct to say OCD is no longer categorised as an anxiety disorder

However many of us working in MH disagree with this, thats for a much longer discussion

However the issue is exactly we are saying, there is this 'you're either A or B' within CAMHS and never the twain shall meet

I suppose thinking it through while Im typing this, its the same as the GP surgery, I have loads of related overlapping health needs are are seen in isolation, a referral to A for this, a referral to B for that, only looking at these singularly when in fact no one is looking at how they interplay and affect and are affected by each other. No looks at holistic care for anything.

Well I wholly disagree on this but that would derail the thread massively. I generally agree with you about the fact that we need to be resilient to not be bothered about peoples negative thought us, akin to 'let them' but I also have issues with the 'let them' theory as well

Too long to type out and havent go the headspace unfortunately.

I think this is a bit unfair. Autism and ADHD are both very well known, frequently represented (if not well) across all media and (though I’m sure it doesn’t feel like it) generally attract more support and understanding than many other neurodevelopmental disorders/differences.

I work with children with a whole range of diagnoses, many of which are far more common than autism and ADHD but which most teachers (for example) even SENDCos haven’t even heard of. For example DLD, which like autism and ADHD is a life long brain difference. Also, if you think there’s a stigma attached to autism then try FASD on for size. The term neurodivergent is factually descriptive and does not belong to people with autism or ADHD. If it helps people to understand what a marginalised disabled child, young person or adult might be experiencing then surely that’s a good thing?