To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

The Gove thread is certainly an eye opener.
God love the poor kids.

It certainly has me thinking I'd have failed even more than I did in school if I'd been subjected to that.

College, different way of teaching was my stepping stone to degree.

Ok, all the posts that you are saying you were replying to me about were concerning autism directly. In regards specifically to behavour, i was in a discussion with another poster about her child pushing her down the stairs and throwing a plate against a wall. I do think that is behavioural or mental health associated and not linked to the kids autism. Your child without autism has no relevance to this. Pushing someone down the stairs cannot and should not be blamed on an autism diagnosis especially in the absence of ld. Having autism does not mean this type of behaviour.

If your child has a social care package as they can't access autism short breaks and your happy with that, great! Some people don't usually because of a lack of PA's. If your child can't access sb but are having their needs met, what is the point of your post?

We need the laughing reaction back on mumsnet. This is just bonkers.

As I said, the point I made in the second paragraph of my original post applies equally to those with ASD and those without. Same for my follow up replies. You might think it always has to be behavioural (or now also a mental health condition) in the absence if an LD but it doesn’t.

As I also said, I mentioned about relaxed sessions and short breaks, etc. in direct response to your post. I was pointing out the sessions aren’t necessarily “geared towards” those perceived as “more able” rather than those with what some are now calling “profound autism”. I was pointing out such sessions don’t work for many even those you think they are geared towards. That applies whether the DC has social care support meeting their needs or not.

For a person with no ld to behave violently (if that is what you are refering too given in the instance about behaviour i was replying to someone who said her kid has pushed her down the stairs and thrown a plate across the room with no ld) there has to be some behaviour to it. In the absense of ld they should be able to learn that type of behaviour is wrong. Repetitive movements are part of autism, they can be addressed especially with no ld…
Challenging behaviour without ld is behaviour…Surely without learning disability/ low iq they can understand the impact of such behaviours?

@Nmss
This really shows a lack of understanding of how autism can present without LD.
Meltdowns, for example, are often best understood as more akin to a panic attack than to a tantrum. My DS (high iq) has tried to hurt himself (and others if they try to stop him) at certain times. He was in absolute panic mode at these times, beyond terrified. There was no control, he was far beyond that.
I know this could happen again. Everything is about keeping him calm and balanced.

He can understand the impact of the behaviour afterwards, not in the moment of terror.

If someone pushes someone down the stairs, you really wouldn't class that as a behavioural issue? The poster put it down to her childs autism. You can have autism and not push someone down the stairs. Autism shouldn't be blamed for such behaviour. In regs to mh comment read the thread.

The short breaks/ relaxed comment was a direct answer to a question, that has context and was an example of why parents may feel a certain way. The fact that others can't join is irrelevant. It's also not nice for those families too but we werewe're talking about a full group of people that can't attend (those with profound autism) when a session is posted as autism friendly etc and their parents feelings. If you want to discuss your feelings thats fine please do but don't drag me into it.

I genuinely think this is just life for most people. Life is hard, relentless and grinding. It is mostly difficult to manage. It's exhausting and often does not feel worth it. Having a career and a family is doubly difficult. Yes, life is fucking hard. The fact is that a narrative explanation of 'why' your life is hard has made it easier for you to cope — nothing has changed, but you have a narrative with which to comfort yourself. There is no 'biological' basis for your condition, as there is no 'biological' test for it. I do not doubt you have suffered in life, but I don't understand how this suffering amidst outward seeming success is in any way like autism (or now 'profound autism') as a diagnosis.

But that is behaviour. If as pp said a person with autism pushes them down the stairs. If that person was seriously hurt do you think autism would be a good enough defence? I think there may have been a case where somebody pushed a child over a barrier and then said it was their autism (could be wrong, ill try to look it up, i cant remember the outcome).

I am very familiar with meltdowns, pushing someone down the stairs is not a meltdown (it wasn't described in this way).

This is a good example of why autism in particular is getting bad press. If someone with a diagnosis can behave in this manner then say oh but autism, it helps nobody. Even if someone struggles with emotional regulation that needs to be addressed and not written off as autism.

For some, it wouldn’t be behavioural. Not everyone with autism has the same difficulties. Just because not all with autism present that way doesn’t mean some don’t. I have read the thread.

I know what you said. I am responding to your posts. It isn’t irrelevant to point out some of those with ASD who you think sessions, relaxed performances, short breaks, etc. are ‘geared towards’ can’t access them either.

Autism does not equate to violence or other behavioural needs. Unmet needs may show that way but autism itself doesn't.

Autism should not be used as an excuse either by the person, their oarents or carers or professionals.

Nobody writes anything off but some behaviours are caused by autism and processionals/ carers etc should remember ND and adjust care and treatment accordingly.

I’m not saying it is acceptable in any way in case you think I am. I just don’t think people generally mean a panic attack type situation when they say behavioural.
But maybe you do?

It isn’t about using it as an excuse. It is about how some autistic people present. Yes, unmet needs can exacerbate VCB, but for some even if needs are met, they can be violent directly related to their autism. No all, but some.

If you are meaning Jonty Bravery, he is (or was the last time I saw something about the case) at Broadmoor rather than a typical prison, so whilst autism isn’t an excuse it can play a significant part of the case.

Looking at wider cases, some people’s autism is defintely part of the case. For example, some are detained under the mental health act (yes, I know it isn’t a mental health condition) rather than dealt with purely by the justice system. Others are deemed unfit to plead because of their autism. Some are deemed unfit to stand trial - like one of the DC with ADHD and autistic traits in a recent shocking, horrendous case.

The mental health difficulties is a fence post that sticks up my backside.

So, my worry is that many, many parents think that they are 'waiting for assessment' because it will do something. However, diagnostic services are just that. Diagnostic. You literally get a report that says 'yep, they're autistic'.

CAMHS will gatekeep services and ASD is often used. We had complete refusal by CAMHS until I had undertaken the Barnardo's Cygnet Course, even though I'd been an SEN parent for over 15 years. The only thing that course gave me was the ability to write 'course attended on DD/MM/YY'

Mental ill health isn't necessarily a result of ASD. It occurs alongside it or because autistic needs aren't met.

DD1 has ASD, likely ADHD, learning disability, a brain malformation, historic eating disorder with mental health consequences, and has suffered psychosis. Nobody can unpick what has been caused by each other. Was the brain malformation responsible for the learning disabilities or the ASD? Are the learning disabilities part of her ASD or her ADHD, or her early years epilepsy? Would she have got the eating disorder if she hadn't become depressed and anxious? Or was the depression and anxiety a result of the eating disorder? It all goes on.

Ultimately it's a mess and she's highly dependent and will be for life.

I think meltdowns vary from person to person. Some people don't even meltdown as such, they shut down. Having autism doesn't mean that these behaviours are excusable, even in those with limited understanding and communication as well as those with good understanding and communication.

Behaviours are a result of something being wrong or off for that person. It could be toothache or a pain in someone who can't communicate the pain to get help, it could be being overwhelmed socially in someone who can communicate or a new environment (just looking for examples, there will be more and exceptions). Putting it down as autism rather than addressing the cause doesn't help. The cause has to be addressed regardless of whether thats physical pain or mh or anything else.

Autism can't be allowed to become an excuse for any and all behaviour, which if i'm honest it does sometimes appear to be. When anything bad happens on the news by an individual that's not terrorist related, how often is itfollowed up with an autism or suspected autism diagnosis.

Some behaviour is directly linked to autism; repetitive behaviour which can present as challenging.

Preface; im asking in ernest.

I don't understand this, i can see that people can be violent in nature regardless of any diagnosis. An autism diagnosis alone does not mean vcb or violence. Can you give me an example of where it is the autism directly? I understand repetitive behaviours and the impact these could have but in the absense of learning disability, i struggle to see an individual not being able to substitute a behaviour that would cause harm to someone else. Headbanging is thr obvious example for people who have ld too and you see many wearing helmets but sibs without ld are usually linked to mh because of the understanding?

This isnt arguentative, it's me honestly engaging.

It was Bravery i was thinking of but wasnt he sectioned only after attacking someone in prison? - ive not checked so genuinely could be wrong on this.

Yes, i understand how autism plays a part in cb but it's not just the autism.

Sectioning of some people with autism under the mh act is a scandal which needs addressing and down to cost of meeting their needs in the community. Obviously not those who have commited serious crimes.

Autism shouldn't be used as an excuse. If someone has sibs or cb, it's due to something they need not happening. Autism doesn't make someone have cb, commit crimes or anything else regardless of iq.

Of course they are blocking. There are finite resources. Do I prioritise those who shout loudest or those who I believe have the greatest need? Obviously the greatest need.

At no point have I said that you parent your way out of autism. I don't know where you got that idea from. What I have said is that, in my substantial experience, there are large numbers of parents who don't want to act on their (non medical, non ND) issues, they want a diagnosis to absolve themselves of any responsibility. I also said that I understand why people find this hard to believe; it doesn't mean it's not happening. Parents want a referral to CAMHS or other agencies which can not happen until they have tried every other avenue. Consequently, those in genuine need have to jump through the same hoops to get that help.

So no, I'm not ill informed, I'm quite well informed on how to get support for those who need it.

I have a couple of hours now where i wont be able to post. I will come back eventually although it maybe tomo.

The cause has to be addressed regardless of whether thats physical pain or mh or anything else.
Would that it were as easy to address MH problems in an autistic person as you make it sound @Nmss. We have been struggling for years. As a pp said CAMHS gatekeep. So do adult MH services I’m sorry to say.

Just to add, when DS was on the diagnostic pathway, various diagnosticans and teachers etc often wondered aloud whether particular actions of his were autistic or ‘just behavioural’. The term seemed to be used to describe actions or habits that were either premeditated and/or the result of ‘poor parenting’. Being naughty rather than autistic is what I think they meant by ‘behavioural’ in this sense.

Thank you for this explanation. I was the poster referred to who said my dd had tried to push me down the stairs and thrown a plate across the room. This fight, flight or freeze (nervous system collapse) is meltdown behaviour (communication of nervous system overload). She is very capable of understanding impact after the event (and is appropriately ashamed and remorseful) but not during.

To be honest though, I have given up trying to explain this to certain posters on here who still insist that there's only one way to be autistic - and have an autistic meltdown. And no, it's not behavioural, because the usual CBT and 'behaviour management' strategies don't work. This is what autism burnout plus extremely high anxiety looks like.

Yes. Some people have lots of care and support needs and couldn't function without them. Whereas, others work, marry, have children and others would barely notice any differences from NT.

MH issues directly linked to the way an autistic brain works can cause violence and self-harm, generally when a person has lost all control.
I don’t agree that you can separate poor MH from autism (in some people) and from years of dealing with psychologists and psychiatrists I am certainly not alone in this thinking. A person does not have asd separate from dsd separate from adhd separate from ocd separate from dyslexia separate from dyscalculia etc. They are medical constructs which collect certain groups of traits together but it is one brain and you cannot box things up so neatly in reality.

@Nmss I did say it isn’t about autism being an excuse.

An autism diagnosis alone doesn’t equal violent behaviour but, for some, it can be part of how a person’s autism presents. For some, it can be ‘just’ autism’. Just like, for example, some autistic DC have sensory processing difficulties directly related to ‘just’ autism, but not all do. Or e.g. some autistic individuals have sleep difficulties directly related to autism rather than a separate condition, but not all do. Or e.g. some autistic DC are non-verbal directly related to their autism rather than them also having a separate language disorder/delay &/or LD.

For example, part of DS3’s autism is that he cannot cope with change. Not at all. Even tiny planned changes. That is directly related to his autism. His reports say so. It isn’t related to another condition. It isn’t a mental health problem. It can’t be prevented. Changes can be minimised and DS’s inability worked on/supported, but it can never be removed completely because there are times things do change &/or have to change no matter how much you want to address the cause. His complete inability to cope with change manifests itself in meltdowns, including violence towards others and himself. DS3 cannot substitute that for another less harmful behaviour at this moment in time. Who knows if he will be able to some day, but he can’t now as a teen and professionals don’t think that will change.

He once had a meltdown because of an unavoidable change of plan. The meltdown was in public. During the course of the meltdown, he attracted the attention of a passing police special constable. DS3 hurt (not seriously) the special. DS3 wasn’t arrested because it was acknowledged DS’s autism led to the situation, it wasn’t intentional, he didn’t have capacity to be responsible for his actions, and that the police should have listened to DH who told the special to give DS3 space rather than get close/touch him. It isn’t about it being an excuse, but it is an explanation.

but sibs without ld are usually linked to mh because of the understanding?

Maybe usually, I haven’t seen statistics either way on that, but not always.

Absolutely agree with this.
This is our family’s experience too as I have also tried to explain upthread.