To be angry at the ableism here on MN

[QuitChewingMyPlectrum]

I don't see any threads saying cancer is over diagnosed. Or used as an excuse for something.
More and more ableism is showing up here targeting the ADHD and autistic community and I'm pig sick of it.
Overdiagnosis conversations involving those who have no lived experience (your kids don't count, sorry) suck.
You have ZERO idea what it's like to be us.
And you say WE lack empathy.

Do you know the neuroscientist's name by any chance?

Do you not understand what autism and ASD are? Both are associated with difficulties in social interactions and with problems with emotional regulation as a result of cognitive differences. 25% of autistic young people behave in violent and challenging ways towards care givers. They do this not because they are choosing to be 'naughtier' than other children, or because they have feckless parents, but because they lack the developmental capacity at this point to behave more adaptively. No amount of punishment, including the physical chastisement cheered on by a grim chorus here on MN, will change that.

These children and families need specialist support and resources that are routinely denied due to funding issues, and instead endure constant public shaming by judgemental types who appear to get their jollies by deciding they can be the arbiter of what is a genuine disability. I guess it helps them feel better about themselves in some way, but it is both the height of arrogance and a fairly abhorrent form of bullying of a group who could do with social solidarity for the challenges they live with. It has real life consequences for disabled people and their families, just like racism.

I had to step away from this discussion last night as I was so angry/upset. Apologies if I left anyone hanging and disappeared. A few points to follow up:

1. The BBC documentary on the private clinics has been very damaging to the ADHD community, particularly those with private diagnoses. Yes, there are some shysters out there and these clinics should be investigated, regulated and shut down. There are also highly professional companies offering private assessments that operate properly.
2. I don't totally discount the opinions of NT parents with ND children, but when it comes to complete understanding of the issues that we face not just in childhood but adulthood, including the inherent ableism they don't have lived experience of what it's like with a brain like ours. Not from the inside. They don't know how it FEELS.
3. I think there are some posts on here that do skate on thin ice. It's important these discussions are had, but slurs and ableist language has to be shut down or posters asked to edit such posts. It's the only way people will learn.
4. Finally, you can be a good parent with a challenging child. You can be a poor parent with a challenging child. You can be a poor parent of a child with no diagnosis, behavioural issues or anything else. You can be a good parent of a child with no diagnosis, behavioural issues or anything else. You can't make a generalisation about "people" using such diagnoses as an 'excuse' for poor parenting. Who are these "people"? Do you know them, their home situation, the challenges they and the children they're parenting inside and out? I very much doubt it.

There are also plenty of physical conditions for which diagnosis is based on self assessment or description of symptoms. Asthma for example. I have a diagnosis and prescriptions for asthma which are almost entirely based off of self reported symptoms and self reported peak flow. Never had spirometry. Young children can't have spirometry or peak flow so they might often be appropriately prescribed medication based on parent description of nocturnal or exercise related cough or wheeze. If a parent relentlessly seeks escalation of management with no objective evidence of disease that's a different matter and this is partly why regular assessment is part of the management. But still, the distinction isn't as clear cut as people make out.

Evidence is anecdotal. People are very well informed - and if someone wanted to get a diagnosis of ADHD, they could easily do so by listing all the symptoms, regardless as to whether they have it or not. It’s open to exploitation especially when someone could end up with medication being prescribed that actually has value on the open market in some places.

Spend a day with DH or DGD and it’s like being with a human whirlwind! It’s exhausting just to watch! Nobody could fake that level of activity for long! (DH’s idea of a break isn’t to sit down with a cup of tea - instead he paces round the whole house. He paces around with his bowl of cornflakes. He only sits down to eat, when he needs to use a knife and fork; then he’s up like a jack in a box, the second he’s finished)

Its no good someone, going into an appointment saying I have got all these symptoms; but then they turn up on time; they could understand the formal letters and forms; they sit there normally with no constant fidgeting; with appropriate turn taking in the conversation; no talking over the psychologist/psychiatrist nor going off at a million tangents; no climbing the walls; remembering all their possessions as they leave…..

When I took adult DD for her assessment, first of all, I had to apologise for being late due to her messing about, after the time I had told her, we had to leave!

I think the issue here is we actually are very early on in our understanding of neurodiversity and specifically ADHD. I've heard an expert on the subject compare our current understanding to when we were still using leeches to treat physical illnesses.

Trauma, particularly trauma experienced at a your age, can cause symptoms the same as those shown with adhd, as can poor or chaotic parenting and dopamine inhibition. I think in the future we'll see adhd as a collection of behaviours or symptoms with an incredibly wide range of causes and the onus will be on the doctor to identify the cause and prescribe accordingly even if that means social prescribing rather than medication.

There was a terrible case a while ago of a child who was acting out and was diagnosed with adhd medicated. He later committed suicide and it transpired that his behaviour was a trauma response due to ongoing sexual abuse.

Unless I'm misunderstanding you, you are totally wrong about this. Autism is present from birth, the brain is literally wired differently to NT's. Autism-like symptoms brought on by trauma is NOT autism, it is trauma.

@Yellowlegobrick I've wondered why so many people are struggling mentally and I think a lot of issues are caused by the fact most humans in the western world are living unnatural lives. By that I mean we are going against what we, as animals, should be doing. Our environments tend to be full of stimulation, eg too many people crowded in particular areas, lots of noise, surrounded by stuff vying for our attention. Most work in sedentary jobs and have to make a conscious effort to be active and, on top of that, we are surrounded by food that our grandparents wouldn't recognise. Many are living unhealthy lives using medication to keep "well", eg those with metabolic conditions. We've lost the plot.

I'm autistic and have ADHD. The ADHD has ruined my life. It's the cause of my depression - due to low dopamine levels - I can't study, focus, concentrate, take in instructions if they're not written down, I eat too much and crave sugar - to boost dopamine presumably - I'm overweight, but can't force myself to exercise because it gives me the rage, my dh has to help me make phonecalls, I can't deal with bureaucracy, it affects my communication, people assume I'm stupid. The list is endless.

I can't take ADHD medication either.

People have no idea of how damaging and debilitating ADHD is.

Actually there IS a big issue around breast cancer being overdiagnosed

www.bmj.com/content/382/bmj.p1823#:~:text=They%20found%20that%20potential%20overdiagnosis,those%20aged%2085%20and%20over.&text=Overdiagnosis%20can%20be%20defined%20as,symptoms%20in%20a%20person's%20lifetime.

The point is that there aren't posts on here every day saying that. Nobody on here is telling breast cancer victims that their diagnosis probably isn't real.

@greyflannel You are misunderstanding my point. Of course their struggles mean they hit out more but as a parent you can gently correct their behaviour and model appropriately. I am not talking mid meltdown here, when we are past rational discussion. Many parents I see at work totally brush off behaviours with "yeah but they are autistic" rather than "my apologies, I will try to talk to them about it but this is difficult as they are autistic."
It really does impact peoples views and how they interact in the future. We are incredibly accommodating for families with ASD but not at the expense of our staff being assaulted.
As an example - A young member of staff was running a workshop and a child kept hitting them. The staff member approached me about it and I went to speak to the parents. They told me he is autistic and likely trying to get their attention. My reply was in that case to ask them to have to have a word with them and suggest another way that they could get someones attention as I cannot explain to a 17 year old that they have to accept being hit. Or if they wanted they could supervise the child to make sure they got the attention required.
I am sure what they really needed was a coffee and a break but if I let my staff get physically assaulted I could be liable in the future.

No, the NHS criteria are evidence based and set out by NICE.

Any other issues you are having are relating to underfunding, understaffing and complete overwhelm. We have had a total flood of referrals (a quadrupling in my area) post COVID, on top of a 65 percent increase 2017- 19.

Our service is staffed for 90 referrals a month. We get over 300. Of course the waiting list is growing.

The effect might be a shit service (you don't want 5 years in my area though) but it's not because we are shit. The more professionals trained at NHS expense who go off and offer private assessments charging parents a fortune the worse it gets, frankly.

Actually there IS a big issue around breast cancer being overdiagnosed

Over diagnosis is not misdiagnosis. With cancer this means that the disease is being picked up when the patient would likely have died of something else before the cancer killed them. That's why the rate continues with age.

It's nothing like giving someone an adhd label without proper assessment, simply because they paid to go private.

Not really . People can still be diagnosed with autism after brain injury by example ( my son and multiple children I know where ) . It was not presented from birth . This is just a misconception . You can say then it’s not really autism but the reality is all the symptoms are there a, children with cerebral palsy are diagnosed with autism too despite being related to another condition .
Since autism is nit really a illness but a spectrum there are no set parameters that it’s present from birth

If a child is reacting that way then the school is nit creating a good environment and making the necessary accommodations . I doubt it’s the parents fault , more the education system fault for nit training people as you

This is definitely a difficulty. My friend is an SEN teacher and she is one of the most child led teachers you could hope to meet. Her own adult child has multiple complex needs included behavioural issues and she has some ND herself so she absolutely gets it.

But she has spoken of having to deal with this level of parental engagement where a lack of pro activity and denial is still ongoing. So the parents are acknowledging the ND but they are not able to provide the input to deal with the issues or actually they have similar issues themselves so they simply do not have the capacity to deal with the issues. It is nearly always the case though that parents are doing the best with that they have themselves.

I have two kids with ASD and they do need input to help them manage and regulate their emotions and obviously those emotions are what is communicated via the challenging behaviour. That is the nature of ASD but equally people with ASD can and do develop these skills if they have the capacity and the input required. My DD is now an adult and she has improved significantly at self regulation. It takes a significant amount of parental energy and awareness to support that development. We have been lucky that we have had excellent parent courses along the way to support us to learn this stuff not everyone gets that and I had zero clue when I had my first child.

I wrote previously here about my own experiences growing up with a very emotionally dysregulated father with ASD and it is abundantly clear that he was never given any of the input he needed. My siblings are the same and two of them have diagnosed personality disorders as well as ASD which largely comes from not being able to regulate emotion and behaviour and our parents not having the capacity to support them to learn it.

Strangely the person that told me last that sad etc is over diagnosed has a child with autism and will never work or live within society as the rest of us. So I guess they have lived a life with a child that has special needs - they are entitled to their opinion

@Cucucucu I don't work in a school. I run a private business.
My staff have been punched hit and spat at many times with parents brushing it off.
My children are ND too but if they were displaying this behaviours I would apologise and try to correct them. Admittedly, they are mild conditions and parenting must be exhausting for some mums.

"Autism spectrum disorder (ASD), usually called autism, is something you’re born with." Autism spectrum disorder (ASD) | NHS inform

Cool.

And is an NHS diagnostic team the only way to get a diagnosis?

Do you deny that you can get a diagnosis from much less thorough avenues?

Do you think your experience negates the documented shoddy work in this area?

If there are schools who are pushing for a diagnosis for funding then these referrals will take time. In the meantime the parents of those children may well say that they have ADHD etc even though nothing had been confirmed simply because the idea has been put to them by a professional

Ha. A whopping 21.1% of the Welsh population are classed disabled. Wonder how that happened?

Is there much documented shoddy work in this area? Could you share it please?

In my family we have 2 NHS diagnoses and 2 private ones, the private ones were much more thorough and used more highly qualified professionals. Most practitioners would not risk their license after spending over a decade training for a few quid, especially as the NHS waiting lists are so long now. They are practically able to print money at this point and many have closed their waiting lists due to high demand. Why would they risk not following NICE guidelines when they are turning customers away they're so busy?

Overdiagnosis conversations involving those who have no lived experience (your kids don't count, sorry) suck.You have ZERO idea what it's like to be us

Ok, but I have ADHD, I have 2 children with ADHD, one of whom is also ASD

And I want to have a conversation about overdiagnosis, which is a thing whether you like it or not.

How about you stop assuming you know who is saying what and why? It's not ok. And stop telling us what we can talk about, while you're at it. Not everything you don't like is an ism and banned.