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.

Mine don’t either

That is a great explanation @Lougle

@Lougle your explanation is one of the best I have seen.

The problem is that many parents of children with profound autism reject the broadened diagnostic criteria, because they no longer recognise their own child within what they see as 'watered down' criteria - which more closely aligns with the female presentation of autism. This is strongly evidenced on this thread. They don't believe it is possible to mask because their experience of autism is markedly different.

This leaves parents like me (a masking child who predominatly presents with dysregulation, sensory processing difficulties, very high anxiety and periods of burnout but no apparent learning difficulties, verbal and able to use the toilet) with something akin to Imposter Syndrome: "Did I cause this with bad parenting? Are her difficulties better explained by 'just' anxiety? Could something else be contributing to it, such as adhd? Is this just her personality? Am I just dealing with her wrong?" That last one in particular haunts me, because there were certainly times at the start of our journey when I definitely did get it wrong - and still do sometimes. "Have I exacerbated her trauma? Might she have improved if only I'd done x, y or z differently?"

And then you get those who compare my dd's nervous system dysregulation in the heat of the moment (violent lashing out) with awful premeditated attacks such as those committed by Jonty Bravery. My daughter is kind, and funny, and thoughtful, and determined, and loving. It's just that the red monster you describe lurks just beneath the surface and we're learning more every day about what works to contain it.

Politely, how do we stop those kinds of attacks happening, such as JB’s, if we aren’t allowed to talk about the earlier warning signs such as “violent lashing out” before they escalate?
It’s so dangerous to ban conversations, comparisons, etc when talking about patterns of behaviour on the basis that it offends people who exhibit, or who have children who exhibit, similar behaviours.

JB's actions weren't lashing out due to nervous system dysregulation though, were they? They were malicious and premeditated, hence the distinction I've made in relation to intent. The only similarity between my daughter and JB is that they both have autism. They might both have brown eyes, too, but that doesn't make my dd any more likely to carry out a malicious and premeditated attack on a random stranger.

There are things you can do to help a child manage their nervous system over time to reduce the risk of frequency and intensity. I don't know much about JB's background or upbringing, so can't say whether his violent actions were a result of autism, unsupported autism, being raised badly or something else entirely.

I think its about the right people talking about it though? Maybe police, psychiatrists, social care and so on..

jb seemed to have a history not of violence during a meltdown but of more callous behaviours and it seems like the autusm diagnosis was overshadowing red flags for a different disorder which he was then diagnosed with. It meant authorities involved in his care should have taken his threats more seriously that they did. Yet everything honed in on autusn not thd antisocial personanility disorder.

The learning from that should be looking closely at whether violence has another cause and is in line with autism or not if we want to prevent similar incidents.

My son used to have challenging behaviour. He had extensive ot and salt and doesn't now. But he definitely was in that place where he was not in control of his actions and he couldn't even remember them. They were very different than making plans and carrying them out.

”The right people talking about it”?

So who can participate in this thread? And what are the rules about the opinions we can have or questions we can ask?

I have a MA in Applied Linguistics but have been diagnosed with ADHD and dyspraxia. I have a brother who lives in a home because he has profound autism. Where does that put me in the hierarchy of the conversation?

You can chatter all you like on a mumsnet thread - i didnt mean to imply you cant contribute to a thread.

But i dont think you will be preventing another situation like JB by doing so which you said was the aim of talking about him.

You said 'how do we stop atracks like this happening if we arent allowed to talk about it' I said by the right people talking about ig.

I think that mumsnets threads are very unlikely to prevent similar situations.

I think the authorities had some learning about what autism v other disorders looks like that they should act on and they shoukd be the ones talking about it in detail and acting on it to prevent it happening again.

I think on mumsnets threads you will just make parents of anxious girls having meltdowns think how is this a relevant comparison

I think this thread will have zero impact on crime prevention

You're right. The serious case review says (David is a pseudonym for Jonty):

"David’s conduct disorder diagnosis was reiterated in a later forensic assessment, but the
way it was articulated continued to be both tentative and not very explicit. This made it hard
for professionals from agencies other than mental health to understand the implications of
this diagnosis for understanding the causes of David’s violent behaviour or that this could
link to a risk of a future diagnosis of antisocial personality disorder. There was, therefore, also no multi-agency discussions of the associated risks or an understanding of the need for
specialist mental health input into the risk management. Without clarity across the
professional network of the conduct disorder diagnosis and its significance, the level of
concern reduced, and the focus shifted to autism as the root of David’s incidents of violence
with no exploration of whether some of his actions could be explained as aspects of conduct
disorder, requiring different interventions and risk management."

https://hflscp.co.uk/wp-content/uploads/2023/11/david_serious_case_review_-_april_2021.pdf

But we have to remember that he was on the cusp of adulthood. There had only been one concerning incident in recent times. He appeared to have matured.

Also, you can't lock people up because of what they might do. The report says that there was no legally available pathway to provide secure accommodation so they had to use carers to reduce risk.

I think, also, the report really nicely covers what we've been talking about in terms of behaviours related to autism:

1.9.13 In line with current practice, this report uses identity-first language (‘an autistic person’ rather than ‘a person with autism’). This reflects an understanding of autism as a neuro-developmental condition; the way a person’s brain has developed means someone is autistic, rather than ‘having autism’.
1.9.14 For responses to high arousal environments, arrangements and/or
communication, associated with being autistic, which can involve violence and aggression to others, we try to use the term ‘distressed behaviours of concern’. This highlights first and foremost the autistic person’s experience of distress and
the reactive nature of the behaviours over which the person has very limited control– as reflected in the term ‘melt-downs’ that is often used by autistic people to describe these distressed behaviours.
1.9.15 We also use the expression ‘behaviours that challenge’ or ‘behaviour that challenges’ to refer to behavior that poses a risk either to self and/or others. In the same spirit as ‘distressed behaviours of concern’, this highlights that the perception of ‘challenge’ is in the eye of the beholder i.e. agencies and professions, rather than in the intention of the person, and that the deficit too is with agencies/professions who need to be equipped to respond to such behaviours, rather than be challenged by them.
1.9.16 For behavior involving violence and aggression to others that appear as distinct from distressed behaviours of concern because they involve levels of preplanning and malice towards others, we use the term ‘callous and/or malicious behaviour’.
This makes a clear distinction from aggressive responses under stress associated with being autistic and those with potentially other causes. It speaks to the label of ‘callous and unemotional traits’ that is used in connection with a possible risk of
future diagnosis of ‘antisocial personality disorder’.
1.9.17 We also use the term ‘complex needs’ as a short hand in this report to describe situations where children and young people have multiple, interacting needs that often compound and exacerbate each other, creating challenges for agencies and
professionals in diagnosis and treatment. We acknowledge the limitations to this term and use it pragmatically as a blanket term.

As @Owninterpreter says, if anything the Jonty Bravery incident highlights a significant lack of understanding of autism and the assumption that autism equals/ explains any and all types of violence, including callous and premeditated ones. It doesn't. Had various professionals and authorities known this, intervention may have been more effective. Someone could have autism and psychosis or schizophrenia, for example. If only the autism is known about, our understanding of autism is crucial in determining other factors that better explain actions.

So what happens when somebody gets hurt by an adult having a melt⁷down. If I was severely hurt by an yp/ adult when out shopping etc because I was in the wrong place at the wrong time so to speak. I wouldn't be happy with someone telling me that it was because the person has autism therefore there are no reprocussions especially if the person is communicative and articulate or no ld. I write that as a parent of young person with autism. How would a person with no experience react to being hurt? Who gets held to account for damage and injury? I asked earlier how these people are supposed to cope as adults? Is the implication that the majority of children mature out of these behaviours or learn to better control them or will they just continue and society is expected to accept the behaviour?

I am acutely aware of how my son presents and where we take him and how that may impact him. We (not just myself but everyone who supports him) ensure his needs are met so that he doesn't resort to a state like this, it means we are on 'high alert' all the time (i'm sure you will say the same re your children).

Communication is a big issue so it cannot be discussed afterwords, he would likely not be remorseful as he wouldn't understand. As he is getting older, bigger and stronger (think big bulky man) I recognise that if he were to behave in this way and hurt somebody (not a one off) the result would be either that he's heavily medicated or placed in an ATU or both which I won't let happen. Using autism as a reason wouldn't be excuse or reason enough for that behaviour. I also recognise that in public my son can 'get away with' more than what somebody who isn't obviously impacted does because people easily identify that he has severe needs. So, if he vocalises, flaps, squeezes, paces, screams, lies down etc we usually get more empathy than if somebody not obvious displays similar behaviours (im assuming some people will also do these things when then start to get dysregulated or leading up to a melt dowm).

Ps i know i said i'd disengage from the thread but it seems to have become more civil and im genuinely interested.

Pps in regards to language used in the report, i note it says " as reflected in the term ‘melt-downs’ that is often used by autistic people to describe these distressed behaviours." This is part of the overall issue of parents of profound people vs self advocates as a person with profound autism can show preference to language used etc a person with profound autism can't/ don't have that preference. - just a side example of how the narritive of autism excludes people like my son.

Thx

"So what happens when somebody gets hurt by an adult having a melt⁷down. If I was severely hurt by an yp/ adult when out shopping etc because I was in the wrong place at the wrong time so to speak. I wouldn't be happy with someone telling me that it was because the person has autism therefore there are no reprocussions especially if the person is communicative and articulate or no ld."

The police could arrest for assault and then the CPS would look at whether prosecution is in the public interest. If there was doubt over capacity, reports would be ordered to assess the ability of the individual to participate in trial, etc.

I'd hope that a common sense approach would be taken.

I think family members should have the right to engage in the conversation on behalf of those who can’t advocate for themselves, whether that is because of age, LD, MH reasons or whatever.
I didn’t know ‘meltdown’ was controversial though…is there another term you find more appropriate? The vast majority of autistic people, LD or not, have had no input into that choice of word though. And DS certainly wasn’t asked if he preferred the term ‘autistic’ to ‘having autism’. It is frustrating when you hear ‘autistic people prefer’ as if they have a hive mind!

You’re right, I think parents of autistic young people are generally on high alert, especially in non-routine types of environments. Well, I know I am.

I dont think there is a simple answer other than im not sure there is a presumption we should accept violence but that prevention and consequences might look different for that person in some circumstances.

If an adult injured someone in a meltdown, they may well end up in prison depending on what the court etc felt about thier understanding. The presumption is they are responsible its up to them to prove they arent. But they may still have consequences like hospital care or increased supervision.

I think its important not to write off children and teens as just being violent because autism though.

There is so much that can be done to support uunderstanding of triggers and strategies. It just expensive to have that really quality OT and SaLT that can help with this. People blame parents or underestimate how hard it it to get a child who literally can not feel the difference between hunger, anger, fear, needing a poo and pain to learn to differentiate those feelings and how to respond to them appropriately. Its not quick or easy. People hear a child is academic so assume they can think there way to interpreting sensory input and think a respinse to it, but I think its a different system.

I completely agree that people shouldn't be written off as violent because of autism, that's what i've been saying all along.

I accept that all people with autism are different. My ds is very sensory and has a high pain threshold coupled with understanding and communication difficulties i do understand how hard it can be to manage.

If the person has a good level of communication and is able to understand to be classed as academic, surely that is an advantage and makes working on the intro and propre etc easier? It must reduce at least some of the guess work and make things like zones of regulation/ social stories/ comic strips usable resources?

Not everyone also has all those issues differentiating as has been demonstrated on this thread but still experience meltdowns.

I know there's been many thoughtful and comprehensive posts detailing why autism should be used as the reason for these behaviours that i am grateful for, but I still cannot buy into it, there still has to be something that triggers the meltdown which is surely something that can be seen as a need to be addressed. Leaving needs unresolved or unworked on in a person and allowing that to be acceptable because of the autism diagnosis isn't acceptable to me.

I think as is with a lot of autism need properly trained informed professionals at all levels, early diagnoses, reasonable adjustments and adjusted readily available provision, care and treatment is key. When all this is provided criminal activity can be avoided.

@Lougle just wanted to thank you for engaging in a civil and honest way, taking the time to post and not assuming that i was trolling.

Lougle is always reasonable and honest.❤️

"If the person has a good level of communication and is able to understand to be classed as academic, surely that is an advantage and makes working on the intro and propre etc easier? It must reduce at least some of the guess work and make things like zones of regulation/ social stories/ comic strips usable resources?"

Not really. There is a disconnect between what words mean and what sensations they cause. For example, DD2, 18 years old, at least average intelligence (e.g. can understand high level information if it's a special interest) but struggles with literality in language. She doesn't know what 'hungry' feels like. She thinks her tummy hurts. She thinks she's hungry if she has discomfort in her tummy. She doesn't know if she's hungry, or thirsty, or bored, or if she needs to chew.... She still needs me to work it out for her and tell her what to do about it.

DD3 (17) still doesn't have the early warning signs for 'tired'. She will keep going and keep going, then she crashes. When she was young she'd get 'hangry' and I had to make a deal with her that if I put something in front of her mouth and said 'eat' she would eat it, she if I put something in front of her mouth and said 'drink' she would drink it. Because at that point, she had no way of knowing that was the problem, and no way of fixing the problem.

Boys are inherently stronger than girls, so the risk of their dysregulated behaviour is much higher (which is why special schools have 75% boys).

Leaving needs unresolved or unworked on in a person and allowing that to be acceptable because of the autism diagnosis isn't acceptable to me.

Who on this thread has supported anything like that? Parents are often working flat out to manage needs…that doesn’t mean they’ll be magically ‘resolved’ though.

In my DS’s case he was recently told he was not eligible for MH support from the services here (Ireland) ‘because he is autistic’. Imagine how that feels. The support families need often just isn’t there, but in general parents on here are doing their very best to manage needs.

That's my point though. Not being able to distinguish hunger or pain etc is the need which needs to be addressed. For your dd3 who dd3 who got hangry you address the need by feeding them/ giving them a drink. The need addressed and meltdown averted. Having autism doesn't in itself lead to a meltdown, there is always more to it, something that has to be addressed.

I take your point about literal understanding and the mismatch between sensations but i disagree in that better communication doesn't ease the situation even if the communication is still hard.

The stats are scary and i'm aware as I said my son is a young man and quite big.

@Okaylie no it doesn't mean they'll be resolved but at least one person on this thread has expressed that challenging behaviour is part of their childs condition and not due to anything else.

My point is that autism in itself isn't the cause of any cb, there's always something impacting that needs resolving. I did post quite comprehensively about mh support and diagnostic overshadowing as i'd engaged with another poster who said it didn't happen. I'm fully in support of mh needs being met and supported regardless of autism. Please read my earlier posts.

@Lougle your posts are excellent.

@Whatafustercluck I hope you don’t think I was suggesting your DD was like JB. I wasn’t. I was just putting a name to the person the pp mentioned.

@Nmss we don’t take my DSs shopping. They can’t cope with that because of their disabilities. So they would never be put in a position where they may have a meltdown while shopping or around others who were shopping. That won’t change as they get older. Their needs won’t magically disappear or change that significantly. Where they go, what they do, who they are near, who cares for them and how situations are handled are all heavily managed. That won’t change.

Yes, sometimes people get hurt. Autism or other disability isn’t an excuse, but, for some, it is an explanation/reason. You might not think it can be a reason, that there is always something that can be avoided and, if DC don’t have an LD, they can learn not to, but you are wrong on all counts. It isn’t about leaving needs unmet, not working with DC, not addressing the root cause, services not being helpful, or it being easier to blame autism. It isn't ‘using autism as an excuse’ which is why your pp was deleted.

The example I gave previously about DS3 hurting the police special wouldn’t have been handled differently if he was an adult. He still wouldn’t have been arrested. The police would have still concluded he didn’t have capacity - it is obvious. The police took responsibility for the special getting hurt. It was they who were held to account. The letter of apology acknowledged they should have listed to DH on giving him space/not grabbing DS3. You can substitute DH with carer/PA/whoever was caring for him, the same applies.

To give 2 examples from DS1. Last year he head-butted DH and broke DH’s nose during a hospital admission when he had the flu. He was dysregulated and actually already medicated with crisis meds at the time. Not for the benefit of others, but for his own benefit. DS1 was given more after. Again, for DS’s benefit, not anyone else’s. He was able to headbutt DH because of a lapse of judgement from DH placing his head too close to DS. That lapse of judgement happened because DH and I were exhausted because of a policy our ICB has of pausing continuing care funding whilst admitted. Following that admission, I have now secured funding for DS1’s funding to continue during future admissions, so ultimately it was the ICB who were held to account. That will mean a repeat of that situation will never happen again.

Second example, earlier this year, he broke the finger of a nurse. It was when DS was being held down while his port was accessed. We/the hospital have a plan for accessing his port. It was followed, but when DS was struggling, he tried to roll and caught the nurse’s finger at the wrong angle. No action was taken against DS1. The nurse wasn’t angry. Neither were other staff. They know DS1 and us well. The hospital knows DS1 doesn’t have capacity. Hence supporting our application for Deputyship.

My DC aren’t included in conversations about language, either.

Not being able to feel and understand emotions and sensory difficulties are a part of autism.

@Nmss autism itself can leading to behaviours which challenge. And you can’t resolve everything all the time.

Using the example I gave about DS3 and the police. That meltdown happened because of DS3’s inability to cope with change. Any change. That is directly part of his autism. His reports say so. It isn’t related to another condition. It isn’t a side issue. It is his autism.

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.