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.

@Nmss I’ve read all your posts.
What comes across is that you don’t know much about other types of autism that you’re not familiar with, and you’re not taking on board what others are telling you.

Not at all @ChasingMoreSleep 😊 I have however been quite defensive to PPs using the example of my dd's dysregulation to suggest behaviour choice (parenting) as opposed to nervous system response (autism plus anxiety). I myself used JB to illustrate how that is an example of how different types of violence can stem from different causes and require different types of intervention to prevent escalation.

@ChasingMoreSleep shopping was used as a setting it could be any setting. I like you am very aware that some people have needs that won't change or magically disappear. I can see from your posts that you have a considerabke amount to deal with and more than most.

The examples you've given I wouldn't expect to be treated in a way which would warrent the police due to their nature but by your own admission your son can't cope with any change (this i do understand very well) are you not scared to death like me of the prospects that leads to? ATU's are awful and the number of people being held in them or similar hospital settings because of lack of appropriate settings in the community is a scandal.

I wasn't even aware my post had been deleted and stand by what i wrote still.

Hsving a diagnosis, being communicative and having understanding but being able to hurt someone during a meltdown and it be because of autism will never be right with me. Even in your examples, the police took responsibility for not listening to your dh (who would have mitigated), your dh misjudged where to put his head (aware of needs but exhausted), your son like mine will likely always be deemed to not have capacity for most things (im aware its case by case basis) not having capacity puts the onus on those caring for him.

I have to go out now but will come back to read later.

"My point is that autism in itself isn't the cause of any cb, there's always something impacting that needs resolving."

DSM 5 has, as part of the diagnostic criteria, a non-exhaustive list of examples:

"Deficits in nonverbal communicative behaviors used for social interaction"

"Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment"

"Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts"

All of those things, which are directly part of the autism, cause the behaviour which manifests. Nobody is suggesting that the trigger for the behaviour shouldn't be investigated and treated (we have ABC charts, for example), but the trigger doesn't cause the behaviour.

The trigger is the thing that initiates a response, the autism is the thing that shapes the response.

In the same way, a person with an eating disorder can be very violent when they are confronted with fear foods, or are asked to eat quantities that are higher than their brain says is ok. Food is the trigger, but the eating disorder is the cause of the reaction.

@Nmss of course I am scared for the future (although actually I have more worries about their LLI especially in relation DS1) and I believe we have spoken about the shocking ATU situation on at least one other thread both under different names. However, that doesn’t mean it can’t be autism (or other disability) that is the direct cause of the violence.

The same applies to any setting. There is a reason DS1&DS3 have EOTAS/EOTIS. There is a reason for the very high level of care they both have. There is a reason DS1 has continuing care funding.

My examples show you can never resolve every situation all the time. It is impossible.No matter who is caring for DC. Although my DSs aren’t communicative. At least not verbally. About they aren’t non-verbal. And they don’t have the understanding you think they have just because they don’t have an LD. But the same can apply even if DC are verbally able.

Yes this is my situation. I actually have a very verbsl child. Who cant get a diagnosis of LD because in some areas he is very able, but he has a classic spiky profile that means huge defecits in others. He has odofound and complex sensory profile, autistic, pda, tourettes, absence seizures. Some brain plumbing abnormalities but we dont know what they mean clinically 🤷‍♀️

I would say his sensory needs impact hugely on everything but the mix of all his issues make him complex. He wouldn't classify as 'profoundly' autustic though.. he also is 2 to 1 for eotis, has a package of support via social services. Is on a CIN plan with a team of professionals.

Yet some of the 'profoundly ' autistic children i work with in complex jedds school. So all non verbal, some use pecs, objects of reference, asc, some not at all. Many unable to be 'toilet trained' etc. Are in many ways easier to support.

I am really not sure what good it does to compare tbh. But the divide and conquer strategy pitting parents and families of 'different ' types of autism against each other is absolutely working from a government perspective. The narrative the media is playing is helping with this.

So yes OP i hate the mainstream media and givernment spin. The proposed changes to EHCPs are terrifying. Pitting families against each other, the narrative that some are playing the system and msking parents out to be chances looking for an excuse/in it for benefits etc is awful. Anyone who LIVES this life and has to work with/battle the system knows its nonsense. But as we can see played out on mumsnet its having the desired effect.

I had similar with the schools -- despite strong family history and clear issues and us clearly wanting to work with schools.

My kids also don't fit neatly into one conditions - it's ADHD and several common co-morbities they seem to have.

I did read round suspected conditions and parenting technquires round them - and found what worked for my kids - sometimes slightly different things and those adaption changed as they aged. Of course there are kids and conditions you can do much less for - but that wasn't my kids.

It's partly why I'm so concerned and frustrated about nephew - no-one doing that for him the school has him in as little as possible - both parents and wider family seem to have given up. They all seem to be waiting to get him on the waiting list for assesment - which is a year way and then many more waiting and then there won't be a magic bullet at end of it. It's possible when he gets there they say no - happend for one of mine and ASD that everyone else though fitted that child. Longer it goes on more socially isolated and further behind acadmically he gets and frankly I don't get why more isn't being done now.

We had friends with kids with physcial disablilies - and it was shocking how hard they had to fight for adaptations or get them to do agreed adaptations - and eveyone always had a "good" reason why it wasn't possible and sometimes even necessary. It is harder to deny actual problems with a phycial visible ailment - though heard of some case where it was tried - but it's the same attitude of inflexiblity and not our problem till we have no choice.

I understand what you are saying but I find this so sad. Supposing you don't get a diagnosis, does that mean you won't forgive yourself? You are the way you are, whether or not you meet a set of subjective criteria that change over time. We should all be able to treat ourselves with compassion, while trying the best we can to get by.

@ChasingMoreSleep and @Lougle . I'm not going to change my opinion on this. I think to give an increasing number of people a reason for or to excuse behaviour isn't a good path to go down. I understand your arguments, I do. I'm aware of the dsm v but i'm sure given my stance on wanting the diagnoses split you understand i have issues with that and hope in the next version that there will be significant changes. While not everyone with a dx will abuse or take advantage of what they can where they can, just having autism isn't enough to explain challenging behaviour or unwanted behaviour during meltdowns (i'm trying to phrase it in a way where my opinions won't be deleted because others disagree).

If this is to be an acceptable reason, it also gives every stretched services even more of a reason to not look at everything that could be contributing to a behaviour rather than digging down and supporting appropriately (mh services i believe already do this) My ds may be severe but he has still made progress. If some of the professionals were allowed to attribute behaviours to his autism dx rather than looking at meeting his needs, he'd be presenting much worse than he does now especially with sensory needs and hypermobility.

The autism spectrum or presentations are now so vast and different that it can include people like my ds dxd just before two years old because it was very obvious to a doctor with a family and career dxd at 60 years old. While i understand and hope that there would be capacity assessments etc for anything serious anything more lower level won't be and anyone decent wouldn't really challenge someone for behaviour they attribute to a disability. I can feel like this and accept that you feel differently.

@Frazzlesforever OP- yes i do think autism especially is over diagnosed. The criteria for the dx has expanded too far. I have worries over how a dx can be abused in terms of behaviour as well documented above. I also think that in terms in the diagnosis having a definitive meaning so that people/ public as general rule understand how someone will be impacted or present has been lost. I can't comment on the other conditions as i have no experience of them. I do also believe there are people who do use a dx to their advantage fir things like RAP - there were posters admitting this on recent threads wgen Merlin changed the eligibility criteria. I also know parents who have embellished their childrens needs for dla purposes (eg sleep diaries for hrc where the child does sleep through).

OP, also my apologies as I have been involved in derailing your thread and that isn't fair. I'm sorry for that.

This came through on my feed today. The age at which people are giving birth has shifted upwards. If this shift started in today's grandmothers, could this be a big reason we are getting more and more ASD diagnoses?

Some interesting differences between races, but in all groups older grandparents giving birth is linked with higher rates of autism in the grandchildren.

https://www.psypost.org/tracing-the-origins-of-autism-back-to-a-grandmother-s-pregnancy-2026-03-26/

What is the problem with understanding behaviours,not to excuse or minimise but to look at the why. And sometimes that is autism, when my 10 year old was headbutting a wall at a medical appointment that was absolutely his overwhelm feom the environment and part of his autism. Just like his vocal tics are part of his tourettes. Like many people he has several comorbid conditions, autism, pda, adhd, tourettes absence seizures and profound and complex sensory processing. We absolutely are always working on ways to support him. But understanding some 'behaviours' as you call it, as part of autism is part of it. His 'behaviours' is actually distress. Its not about excusing, it IS about understanding and making adaptations and providing support so we can avoid it. For him that currently means 2 to 1 support, bespoke education and a team of professionals involved as we look at future plans.

Some children can be highly verbal but not have understanding to match. Some can not communicate verbally but have high understanding, plenty have a spiky profile and thats quite typical of autism. Then you asd in comorbid conditions, learning disabilities etc. Its not as simple as 'profound' autism or not profound. The kids I work with diagnosed like you say at age 2 or so and in complex needs setting moght fit criteria for profound autism but have less conplex needs. But then others have other comorbid conditions or disabilities.

And as for dla they wont just accept a sleep diary as evidence for HRC 'mum says' is meaningless and not accepted at all. If anything its used to disparage and talk down needs as its just 'mum feels'. Professional evidence is needed.

This is all part of problem, a classic example of divide and conquer, you feel that a seperate diagnosis will help but ultimately the Government just wants to restrict access to support snd this is part of that along with changes to education system.

I don’t think you should be lecturing anybody on how they should think or feel not least somebody who has been let down by a diagnosis system and unknowingly lived with a disability their whole lives. We’re not “all” the same. Years of self blame and struggles don’t just disappear because of Insta type therapy declarations.

I'm not engaging regarding autism as a reason anymore, it isn't productive for anyone including myself.

I am not ableist, you can have that view if you choose but wanting better description and more language to describe behaviours, their causes and for better understanding isn't ableist. I'm allowed to have views that don't correlate to yours, that isn't ableist.

I know dla isn't awarded on parents word but sleep diaries are an accepted proof for dla likewise supporting family letters Or friend letters. There are many ways families can document need. I don't believe you really think this doesn't happen.

@Madthings My feelings regarding seperating the dx have been this way for a long time. It is nothing to do with the government. I'm also not the only one. The reasons for this are more than what i've detailed on this thread and include such things as better research and inclusive research, the big one for me is having a diagnosis that I can say where the majority of people would understand whay that presentation means.

Ughh and as if to prove my point I see this when I log in to fb.

This attitude, this idea thst people are biting a diagnosis, using autism as an excuse.. its nonsense.

Yes my child has one private diagnosis, along with several NHS ones.. he only got seen by nhs in the end after YEARS waiting because the private team (who also work for nhs) were hortified by how complex he was and severity of tics and absence seizures and pushed for a Neurology referal. His nhs autism diagnosis meant everything had just been overlooked, diagnostic overshadowing.. very common.

And yes I fought, I took the LA to tribunal, but I am not rich. Solo parent, several children with needs. Struggling trying to hold down a job but fortunately reasonably educated and my own ADHD makes me pig headed enough that I learnt the law. But the process has broken me and my family.

Thats what the systems do and this narrative doesnt help, pitting families against each other.

If some of the professionals were allowed to attribute behaviours to his autism dx rather than looking at meeting his needs, he'd be presenting much worse than he does now

I don't understand this argument at all @nmss An autism diagnosis and meeting needs are not mutually exclusive. Both can and should exist at the same time. Dd's behaviour is most definitely a direct result of her autism, the multidisciplinary of medical professionals agreed that the behaviour is a communication of distress. The recommendations in the diagnostic report list the ways in which we (school, largely) could better meet those needs, thereby reducing the challenging behaviours associated with her heightened anxiety.

Ironically, autistic girls who mask are less likely to have their needs met than a child (usually a boy) presenting in a more 'traditionally' autistic manner, who is diagnosed earlier and supported to have their needs better understood and met sooner, thus enabling their reactions to be modified accordingly. And it is this gender bias that the revised diagnostic criteria is addressing.

@Nmss I didn’t call you ableist for having different views. I called you ableist for believing violence can never be the result of autism itself. It can for some.

No-one gets HRC just based on a sleep diary from a parent &/or letters from family/friends. It might be part of the evidence, but it isn’t the only evidence. You need professional evidence.

You keep saying you’re not discussing it anymore then come back after you’ve tried to derail yet again re separating diagnosis and belittling autism diagnoses for anybody that hasn’t got a learning difficulty too. Even though if we went by your logic it could be argued a learning disability isn’t due to autism either!

@ChasingMoreSleep Hrc is awarded for night time needs a sleep diary can be used as evidence of this and is recommended by many charities given that especially for younger children some night time waking is expected.

My beliefs aren't ableist at all, i don't think autism alone cam be to blame for violent behaviour and should not be used as a reason. The reason is more nuonced.

Even before the switch to encompass all under ASD, there was still a variation in presentation of those diagnosed with autism. My DS2 and DS3 would have both been diagnosed with autism, not Asperger syndrome, yet they present every differently.

That will be the same even if the diagnosis is split going forward. For example, even within what is being termed profound autism, some will be toilet trained, others won’t, some will be able to eat orally, others won’t, some will be able to communicate (not necessarily talking about verbal communication), some won’t, some will have sensory needs, some won’t. I could continue. So just saying the diagnosis won’t be enough to know how someone presents.

I cant believe ive allowed you drag me back into this!

@ChasingMoreSleep the profound autism dx has been detailed by the lancet. The presentation of this group won't include dr's or people who can hold a conversation. That is better than what we have now which can be anyone or anythimg.

Yes, can be used as evidence. I said it might be part of the evidence. HRC is not awarded based solely on a sleep diary. That was my point.

I disagree that stating violence isn’t, for some, the direct result of their autism isn’t ableism. It is.

Can you say where exactly I said profound autism would include people who are doctors or who can hold a conversation? You will struggle because I haven’t. None of my examples included them.

No-one is forcing you to participate. No-one has dragged you into anything.