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 problem with overdiagnosing is that there are only so many resources which need to be used on the people who are most affected. Lots of people are nd and or have mental illness they don't all need diagnosis and extra support. For e.g. if you've made it to your 60s have a home, a family and a successful career do you really need to be chasing a asd diagnosis adding to an already long list.

Couldn't agree more. My 16 year old DS is currently under the crisis team having had a major mental health break down a week ago. Everyone he has seen professionally since has said they feel he has more than a few autistic traits and now we look back we can see what they mean.

All we have had from family members is "why are you trying to label him?" "he's not autistic or the teachers would have noticed by now" or "oh apparently everyone is somewhere in the autistic spectrum"

I think it can be difficult to discuss without causing upset to those either with a diagnosis / label or who seek one.

I am sure I’m autistic but unlike most it would seem, I really don’t want a diagnosis. Hard to explain quite why but i don’t think it would change my life for the better.

In the majority of cases i am not sure that the proffered support and intervention exists.

100% agree @Frazzlesforever as the parent of a 9yo dd who is very similar to yours (also not currently attending school). Around 80% of autistic girls remain undiagnosed at 18yo. There is no over-diagnosis. And the fact is, that if they were getting diagnosed and supported properly sooner, it would actually save money in the long run.

https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum

I'm diagnosed with bpd and the diagnosis has made my life significantly worse their are technically no meds for it my area doesn't offer dbt which is the gold standard treatment and people especially medical professionals do not like people/patients with bpd. And if you put it on a job application you've got no chance. I'd never heard of it before being diagnosed but im aware their are people who fight for this diagnosis and I would always say why as nothing good will come from it.

Yes if it suddenly impacts you . Menopause can have a huge effect on undiagnosed women. It is a help to have that diagnosis if only to better understand yourself .
My eldest went undiagnosed during her schooling , quiet anxious child who wasn’t a bother to have in the class but very difficult time for her in many ways . It wasn’t she attended her rg uni and had to use support services that she and they realised she had ocd and add and she went through all the burdeles to get diagnosed. It’s helped her find the right ways to cope day to day. It’s also shown us that our youngest has it, which in turn has allowed us to support her and guide her at home ,understood her need to disregulate at home in order to regulate herself . Whilst she doesn’t need as much support as others , her diagnosis is still important to her and us . My middle is nt and you can see the clear difference . Plus it will help her access the right support at uni .

There is a fundamental misunderstanding here - (1) you can only get an autism or ADHD diagnosis if you have had difficulties all your life (2) intelligent girls and women in particular are excellent at hiding their difficulties.

I was diagnosed with autism in my mid 50s and ADHD in my late 50s. Everybody, even my close family, thinks I have been managing just fine but I haven’t been. For example, the autism in particular makes me very vulnerable to bullying and abuse because I don’t understand body language, can’t read between the lines etc.

An ADHD diagnosis comes with treatment, which has been amazing. And incidentally, falling estrogen levels that come with the menopause make ADHD worse because estrogen has some kind of involvement with dopamine activity in the brain.

I have a DD like yours @Frazzlesforever, I feel this too. She's nearly 18 now but it has been a really difficult couple of years, her mental health is not good. She's been coming to terms with being autistic and all around us there is a rhetoric of 'overdiagnosis' which feels exhausting

And here in lies a classic example of the ignorance spread by social media. Please educate yourself before posting falsehoods that spreads ableism.

https://www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/

The above mentions the damage such misinformation causes.

Autism and ADHD are under diagnosed in this country,both wreck lives and diagnosis is hugely important.

Diagnosis does NOT bring support only need does.

We now know far better how autism and adhd presents in women. Why should women and girls let down massively by the male focused diagnosis process not have a diagnosis for something that impacts life significantly?

Well the whole situation is upsetting and draining.
I’ve lived 30 years with autistic DH with zilch executive functioning.

DS1 diagnosed ASD/PDA - has not attended secondary school at all. I’ve ’let go’ of any thoughts of ‘normal’ for him: he’s been on fluoxetine 2 years to great benefit and things were really looking up, considering college and last few weeks he’s crashed and OCD stuff is appearing.

DS2 I’d always thought was NT but he’s crashed in first year of secondary school. So now I must let go of ‘normal’ for him too. My happy lad is so miserable all the time. He’s heading for fluoxetine too. Autistic traits - but prob insufficient for a diagnosis.

Never ending worry, fear - no one understands unless they’ve been through it - but are quick to hand out the - ‘it’s being over diagnosed, wasn’t like this in my day, have you tried a routine?’ comments. Try having to accept you need to medicate your children so they can cope with reality.
I’m utterly mentally and emotionally exhausted and it will never end till the day I die.

Sorry I’m not much help but no, you’re not imagining it, they’re clueless.

This is one of the headlines I'm referring to. Girls have historically been underdiagnosed as autistic with difficulties wrongly attributed to mental health disorders. This kind of move could massively put back the small gains in understanding and diagnosing autistic girls.

The problem with overdiagnosing is that there are only so many resources which need to be used on the people who are most affected.

I don’t know why you’d think insufficient healthcare resources requires a fallacious conclusion that people are being overdiagnosed instead of we need more resources. If healthcare must be rationed, which it is, then that also doesn’t indicate over diagnosis. Over diagnosis doesn’t exist.

Lots of people are nd and or have mental illness they don't all need diagnosis and extra support.

Everyone who is mentally ill and/or nd do need diagnoses and the vast majority will also need extra support. The fact there are lots of them doesn’t cancel out the need. This is a slippery slope of thinking as it could be applied to maternity care. Lots of women get pregnant and they don’t all need prenatal care or even a hospital to give birth. Pregnancy is being overdiagnosed because we don’t have enough resources for maternity care,

if you've made it to your 60s have a home, a family and a successful career do you really need to be chasing a asd diagnosis adding to an already long list.

Firstly, children and adults are on different lists. So an adult referred for assessment has no impact on the wait for children. Secondly, abled adults of working age are prioritised ahead of disabled adults or the unemployed/retired.

Thirdly, the ASD/ADHD diagnosis isn’t all about finding yourself, usually by 60 you’ve had some trauma, perhaps your family fell apart and you have an ex and estranged children. You may have chronic health conditions that require treatment. The therapy for trauma, couples counselling, reconnecting with children, even the medications you can take are all affected by whether you are neurodiverse.

I do understand wanting an adhd diagnosis as meds are available. But autism when you're out of education is surely something you can educate yourself on and manage without sitting on a 2 year waiting list. If you tested every single person on the planet I would imagine their are more nd then nt people but its a spectrum and a lot can manage on their own yes its harder but a diagnosis won't change that

No one fights for a BPD (borderline personality disorder) diagnosis.
I had it for a few years.
It was a mis diagnosis that was later struck off.

Personality Disorders are not neurodiversity.

https://www.tes.com/magazine/analysis/general/why-uta-frith-wrong-about-girls-and-autism

Yanbu

All my children have been late diagnosed with both after huge mental health struggles caused by their late diagnoses. Late diagnosis has cost the NHS a huge amount of money.

I was diagnosed in my late 50s. I may have a degree and husband but ND has had a significant impact on my life. I was let down massively by the male focused diagnostic process and very much deserved my NHs diagnosis that was fast tracked in order for me to support my struggling children who were also hugely let down by the diagnosis process.

There is no over diagnosis.

To add with our youngest it has been suggested we test her for autism too but since she is coping well with her add strategies she has not wanted to go down that route.
dd1 went through hell from the age of 11-18 nit understanding why she felt the way she did , feeling lonely inside , weighing 43kg at one point. We struggled too as parents not knowing how to help her and may have been too harsh on her ( she’s 28 ) we had no idea someone so high functioning in school
could have ocd and adhd. She never had the right support. After her diagnosis and the right support and right therapy and coping skills , she’s a totally different person and happy.
The fact that many girls present different and stereotypical views on adhd made her fall through the cracks and I still have some guilt over it. I’m glad there’s more awareness now.

People absolutely do fight for bpd diagnosis have you been on tiktok lately. Of course bpd isn't nd but its often misdiagnosed and ends up being autism

I think people who are NT are shocked at the explosion of ND kids and the associated costs . If you read MN you’d think people only had ND children and it’s alarming . I don’t understand why more is not done to find out why .

I don’t understand the term over diagnosing, do people mean misdiagnosing? How can you over diagnose, someone either has a condition / disability or they don’t. It also over looks the struggle that not only an ND child faces but the parent does too.

I’ve just come back from visiting my Dad. As the parent of ND kids, I have heard lots of quite hurtful comments. Everyone has a label these days, kids are clever they hear the label and think they can behave anyway they want… Not fair to expect the school to support as too much need etc. strangely they seem to have a few friends who’s grandkids are not in school and seem to defend that though… but my 3 year old is naughty / bad during his outbursts! Of course he could just be a threenager or since his siblings are both ND…

Indeed, there are also articles within the same publication that challenge Uta Frith's theory. But nobody is rushing to publish or read them. See also this:

https://www.autism.org.uk/blog/challenging-misinformation-about-autism-using-evidence-to-correct-false-claims

Incorrect.Your ignorance is astounding, yet still you feel able to pontificate and dismiss a disability.

Only 1-2% of the population have autism and only 3-5% have adhd. Saying everybody is a bit ND is hugely ableist.

Diagnosis helps massively.

Where did I write everyone is a bit nd

What explosion???

The numbers with both are low and both are under diagnosed.

We have become more informed as regards ND in girls and that is a good thing.