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.

The 2 are not exclusive at all, and my experience wont be the same as many people here, I have a sibling with autism, but know that there was a high likelihood of an attachment disorder cross over, or misdiagnosis for that

In terms of my work, I see quite a specific cohort where trauma and attachment are a huge feature and I have been involved in several assessments where even though the child does not live with the parent anymore, the parent, rightly, is still part of the assessment. Parents in those situations will either not understand or actively minimise the child's exposure to trauma/violence/neglect in the past and no matter the history that we as professionals have provided there seems to be a minimising of those issues once the assessment takes place.

Ive had several assessors, years on, who are still working with the child that we are working with reflect that they may not have made that diagnosis all those years ago because as the child has developed its clearer that the issues were trauma/attachment based.

My DD was recently diagnosed with autism via a private clinic. We were not especially chasing a diagnosis, but we were being encouraged by school.
On being told of her diagnosis I was told that 20 years ago she would probably not have met the criteria but that now, more is being understood about autism and how it presents, especially for girls. So the definition of autism is effectively getting broader.
I also suspect that if we had gone down the NHS route she wouldn't have got the diagnosis. This is anecdotal but I work in psychology and come across young women who did not apparently meet the threshold but seem more obviously autistic than DD.

That was my thread, where a few posters came on to tell me my symptoms aren't indicative of ADHD (they are, it's just because I don't have the 'classic' hyperactivity). It was mainly supportive with a few people saying that ADHD is used as an excuse for laziness. I know myself and know that the fact that I have lots of symptoms, have beeb diagnosed with OCD but then told by a specialist in OCD that I should have an ADHD assessment, paired with my struggles throughout childhood to adulthood warrant an assessment. Hopefully ADHD specialists know what they're doing, I'm sure some aren't great, but I'd argue that the vast majority of people who have an ADHD diagnosis have ADHD. Many will be like me with a misdiagnosis when it's something else (aka my wrong OCD diagnosis). And a very tiny amount of neurotypical people will be diagnosed. But that's the case with a lot of things.

Part of a multidisciplinary autism diagnostic team here.

Correcting one or two misapprehensions:

We always consider attachment and trauma as an alternative hypothesis. The presentations are often subtly different in fact. It's also true that unpicking ND and trauma isn't always easy as being ND in an NT world can be traumatising, but again, slightly different presentation.

We do not diagnose, ever, just based on a list of traits that a parent has made. We always triangulate. We always work directly with the child.

Sorry OP but it is overdiagnosed and over medicated. Some parents do push for a diagnosis to explain away poor behaviour. This is a problem mostly for the genuinely ND who are taken less seriously than they should be because of it.

Yabu

Coming from a family severely impacted by it, its actually the genuine sufferers that face ableism when it's pointed out that that there is a tidal wave claiming to have ADHD that don't.

People are desperate to self label with many not having a bloody clue how it destroys lives. When you dare to question their self diagnosis based on a few tik tok videos you are shouted downland called ableist. Utter nonsense.

It's disingenuous to pretending it isn't happening.

I also suspect that if we had gone down the NHS route she wouldn't have got the diagnosis.

The criteria is the criteria, whether NHS or private.

I'm seeing some comments about some kids not having ADHD, just feckless parents looking for an excuse, and I think that it's worth pointing out that ADHD is y heritable. Many of the people I know with ADHD and autism diagnoses were diagnosed as a result of their children's diagnosis.

So when you see a child who is showing signs of ADHD AND whose parent is regularly late, loses bits of their child's uniform, doesn't fill in permission slips or pay for trips, doesn't show up to parents evening and forgets to make a lunch for their child, it's certainly possible that a feckless parent is looking for excuses for their child's bad behaviour, but it's also very likely that the parent also has ADHD and is struggling with parenting as a result.

This is one of the reasons why adult diagnosis is actually very important - plenty of people can just about manage with ADHD until they have children, and then everything just collapses.

Does it matter if it's not "pure" ASD/ADHD if it's caused by trauma rather than genetics.

It's like comparing someone born without a leg to someone who lost their leg in an accident - they'll still need crutches or a prosthetic and accommodations. There's still something going on.

Schools don't generally get funded on diagnosis, they should be funding on need, what is presented. That's my understanding.

Also your neuroscience friend is doing what most non believers of neurodivergent people do, & blaming this on parents or environment. I don't think this is cool anymore.

I think you probably do need to reflect on what drives you to discuss a family's private medical experiences on an internet forum, or what makes you feel entitled to dismiss the views of a medical professional? Not really for you to pick and choose the ones you see as legitimate.

Of course the real scandal is the lack of funding for SEND provision and the practice of LA's disputing independent medical evidence in order to reduce the cost of EHCP provision. This seems to have led to a culture in some schools where teachers feel able to reject medical evidence, for instance where a child is masking. it's an appalling situation for children and families who are already struggling and are being let down by organisations with statutory responsibilities to provide support.

It's not really straightforward to obtain medication for ADHD in the UK. Bit of a myth that ADHD medication is widely over prescribed in people who dont have the disorder (perhaps in the US, but not here in the UK).

UK GPs cannot diagnose ADHD (possibly some tiny minority with a special interest and accreditation to do so, but not ordinary GPs). They make an assessment with the patient based on a standardised questionnaire and then decide whether to refer to services that do make ADHD assessments. The wait list for such services on the NHS is something like 2 years. The diagnostic process then involves face to face assessment but they are also looking for evidence from childhood such as school reports and statements from family members etc. Diagnosis is made by psychiatrists or psychologists who specialise in neurodivergence. They may then discuss medication.

You can bypass this process to an extent by seeing a private provider. People are more likely to be doing this because they want to avoid a 2 year wait than because they don't want their diagnosis to be appropriately scrutinised.

If you are then diagnosed and medication is recommended, it can be very difficult to get your GP to issue ongoing prescriptions for ADHD medication. Prescriptions recommended by secondary care which are unlicensed or unfamiliar to GPs require a shared care agreement and in general GPs may not feel adequately compensated or protected for the risk they take on in prescribing +/- monitoring these medications. If you have an NHS diagnosis then at least you can obtain NHS prescriptions from the secondary care provider. But if you only have a private diagnosis you may find yourself in the position of having to pay privately for ongoing prescriptions, which is very expensive.

Lastly there is a notion, or myth really, that ADHD medication is wonderful, improves performance in everyone, has no side effects, is a way for cheating life / exams / you name it. These medications come with side effects (affecting sleep, mood, headaches) and many people have to trial several different ones or can't tolerate them at all. Lots of people with diagnosed ADHD aren't taking medication and behavioural and talking therapies / coping strategies etc are also frequently offered.

Given the state of ADHD assessment it's not that unexpected that some people with traits recognise those traits and implement strategies for coping with them, without a formal diagnosis. I really don't see the harm. People with a self diagnosis cannot access medication for ADHD.

This just isn't true now, because in many areas you can't even get assessed if you don't have severe problems either at home or at school any more. They can't cope with the numbers and the waiting lists look bad so kids that don't have bad behavioural or mental health problems are just going to be left to cope without a diagnosis.

People are ableist towards people who have obvious disabilities. It's not a complete surprise that they're ableist to people with hidden disabilities.

Note that I said nothing about it being right or fair.

I don't know why you think such a test will be available for autism when the absence of reliable biomarkers is one of the most striking aspects of the last 50 or so years of research?

I would guess what confuses people is that the H in ADHD stands for hyperactive but you say you're not classically hyperactive. But surely being hyperactive means you're always moving and struggle with sitting still? What's non classical hyperactivity? A lack of attention? Wouldn't that just be ADD or is that not a diagnosis anymore? Does it mean your brain is hyperactive rather than your body as it jumps around so much? Genuinely interested as all my reading is on ASD

4 year waiting lists in most places for diagnosis.

Yet it's over diagnosed 🙄

People just spout shite because they're illinformed and in educated about such matters.

Unlike cancer, diagnosis for ADHD and Autism relies a lot on self reporting and there are many online resources telling you exactly what to report to increase your chances of diagnosis.

Then you have things like the BBC reporter who got diagnosed 3 times in short video calls.

You don't need "lived experience" to read these things and understand the obvious implications.

Really useful report (published 2022) which helps to understand the impact of underdiagnosed autism in girls:

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=autisticgirlsnetwork.org/keeping-it-all-inside.pdf&ved=2ahUKEwjj-JjKtpqBAxUfT0EAHfVKC7EQFnoECB4QAQ&usg=AOvVaw3UWdvS2fnXQD28Hq8cm6-u

For children and girls particularly, underdiagnosis is still a much more prevailing problem than overdiagnosis in my opinion.

Anyone who has a child with SEN will know how impossible it can be to get the right support at school. There is a lengthy diagnostic pathway and getting the right cooperation from sometimes misinformed school staff (I'm sure there are many well informed professionals in schools but there are others who view masking behaviour at school as proof the child doesn't have autism) upon which referral for assessment frequently depends, can be an absolute uphill battle. It's then the icing on the cake to hear that loads of normal kids are being diagnosed with autism these days... Again this is not a diagnosis you can get from the GP but requires a lengthy multidisciplinary assessment process by specialists using strict objective criteria.

There was a documentary recently about private practice times diagnosing all comers with adhd, so it does happen.
Also I do not believe mumsnet should be de-platforming people who do not conform to their world view.Groupthink!

The hyperactivity in ADHD refers to physical hyperactivity.

The problem with ND or I guess other mental health issues is that they do not just affect the person who experiences them. I have a father with ASD eventually diagnosed which being honest in retrospect is very hard to distinguish from a personality disorder when you are a child dealing with the consequences of his emotional dysregulation, his utter self absorption to the detriment of everyone else in the family. We walked around on eggshells as children trying not to set him off and his behaviour affected every member of the family. We were all traumatised in different ways by the lack of connection with our father and trying to deal with his moods. As a child you simply don’t have the skills to deal with that.

I have siblings with ND and children with ND and even though I don’t have ND myself I definitely have lived experiences of ND.

I don’t have a “neuroscientist friend”. I attended a trauma aware seminar for PD where a neuroscientist presented research. Not once did he say that autism is caused by parents or environment. Where did you get that from in my post? He clearly believed in autism and adhd, he just stated that not all diagnosed cases are actually due to being neurodiverse, some people diagnosed are not neurodiverse and are actually trauma impacted. For that group of people he expressed worry as they’re medicated to prevent them dealing with their trauma. The medication is unnecessary.

Schools do get funding for diagnosis to be able to be inclusive and meet the needs of those students so those students can access education fairly. Schools in the UK got LSA and government funding when I worked in England 7 years ago, whether that’s changed since, I don’t know, I’m not there. In America. Canada, Australia and many European countries, the schools get additional funding for a diagnosis. Not sure about other countries.

In the US and Aus, schools I have worked at have known students are trauma impacted but there isn’t any additional funding for trauma, therefore schools (wrongly or rightly) have pushed for an adhd diagnosis to gain additional funding to meet the needs of the student.

Someone commented that “does it matter if adhd is hereditary or caused by trauma, who cares”….or something like that. That is the thing. Trauma impacted children do not always have autism or adhd. Some do. Some don’t. The ones who don’t who are being unnecessarily medicated are cause for concern. So yes, it does matter. And for the record, not once did I say autism or adhd and trauma are mutually exclusive, you can have both.

Its incredibly difficult to get regular and timely medication reviews for children on ADHD medication, you cant get appointments, you see different people each time and there doesnt seem enough recognition of the symptoms and side effects and we're often concerned that the treatment doesnt really have the oversight it should

And, of course, neurodiverse children and adults can also have trauma. No good dismissing it as one or the other when diagnosing and treating the Adhd could actually help get them into a situation where the effects of trauma could instantly lessen or can be addressed - instead of only treating a 'missing leg' and ignoring that there's also a six inch spike sticking out of their hand. Doctors need to stabilise the patient and then deal with the second issue.