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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think a lot of children may be being misdiagnosed with Autism & Adhd

192 replies

Dontyoujustlovethebritishsummertime · 10/08/2025 16:50

When it could really be Pans/pandas?

OP posts:
Dontyoujustlovethebritishsummertime · 13/08/2025 16:44

We’ve veered off the subject of Pp here completely 😬

OP posts:
Strawberryorangejuice · 13/08/2025 17:11

sunshine244 · 13/08/2025 14:57

To add - for high masking boys the histrionic label is given to the mums instead. Which is just as big an issue. I was sent on a parenting course recently. Nearly all mums of high masking boys.

We've made it three years into school before being offered a parenting course which I thought was quite impressive! I feel they are offered to parents when they don't know what else to do.

My highly anxious child needs some sort of treatment (she has a recognised anxiety disorder). But no one will help, either because she's 7 or not serious enough (suicidal). CAHMS suggested some books for us, ELSA (she's had three years), or a parenting course.

Mumofsoontobe3 · 16/08/2025 07:08

mostimportantaspect · 13/08/2025 08:01

Girls usually end up getting a misdiagnosis of a MH issue and being teens who can no longer cope and then getting a diagnosis of autism, so we are talking up to a decade later than a typically presenting boy. It’s a very different kind of fight and the journey is very protracted as everything is biased towards diagnosing male presentation. No one says boys walk away with a diagnosis and that’s it, but you will likely have had an ECHP from age 6 as the package of diagnosis. Whereas girls spend years in and out of mental health services with no answers, being blamed for your parenting, no ECHP and stigmatised as having an emotional unstable personality disorder as a young female (often with an ED on top of all this)

I feel very very strongly that everyone who thinks there is an over diagnosis of autism has no idea what women and girls have to go through to get the same treatment as males

I haven't disagreed with you nor have I argued back. I simply stated MY OWN personal experience getting my DS diagnosed. I already said I don't have girls so don't have that experience. Yes all very stressful, all very sad for the parents and girls fighting a diagnosis and I do sympathise with them. Also no, you are absolutely 100% incorrect on the opinion I've had a 'package' nor have I got ECHP for my child as it was refused due to lack of funding. I got a diagnosis and nothing else, walked out the door with a bit of paper confirming diagnosis and a leaflet with charities on it to support families. Nothing else. No big parade of unwavering support, nothing. Paper. Told to phone the Scottish autism society for advice if I needed it. You seem to have this opinion that boys who are autistic are diagnosed easily, have all this support and packages of support in an education setting and that is not the case at all. Most certainly not for us.

LegoTherapy · 16/08/2025 07:54

I’m pretty sure differential diagnoses have to be considered when assessing for autism. NICE guidelines have to be followed. A school mum had her son assessed privately and the clinic she used did not follow NICE guidelines. He is very obviously autistic and I saw it when I first met him whereas him parents were in denial for years. I was diagnosed via right to choose after being on the NHS list for 4 years and it was a long vigorous process with 2 professionals who saw me separately then met up to discuss my results and if I met the criteria. I completed various questionnaires before I got to that point and sent in a long, detailed epistle about my life. In my ADHD assessment, incidents I considered traumatic were dismissed as not so. I had to talk about my childhood in great detail during both assessments. My mum had to answer lots of questions. It was easy to see that whilst mainly normal for my family I was very much not normal. They went right back to babyhood and my traits were there then.

ByGreyWriter · 16/08/2025 15:27

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Jolie12345 · 14/01/2026 22:49

HappilyUrbanTrimmer · 10/08/2025 17:39

A "controversial hypothetical diagnosis" - sounds like something that is being cooked up to market to parents who don't want to accept that their child is neurodiverse.

I would have thought the same until I experienced it for myself. My son had all the listed symptoms that developed over a few months. Took antibiotics and ibuprofen and symptoms improved. Never had any suspicion of neurodiversity prior to this!

Jolie12345 · 14/01/2026 23:06

LoudlyProudlyHorrid · 13/08/2025 09:52

This sounds like my teen. He started with OCD after lockdown and I put it down to having his early teens suddenly disrupted, the isolation etc.
It has been ignored that this was a sudden onset and also that he was deficient in folate and b12 - we've hopefully rectified the deficiencies.
At camhs we were told very autistic and wait for a diagnosis. We're still waiting.
My happy, easy going child changed overnight.
I think autism is overshadowing other problems that could be helped and are dangerous in themselves if ignored (b12 deficiency).

Has your son recovered? I hope so 🤞

FuzzyWolf · 14/01/2026 23:14

Dontyoujustlovethebritishsummertime · 10/08/2025 17:12

This is true, but many are being diagnosed with autism when symptoms did begin abruptly

Having sat in on three assessments in recent years, in my experience the assessors do everything possible to look for any reason other than autism before going ahead and diagnosing. If there is a question mark over abrupt onset or trauma being the cause, they won’t diagnose.

midnightbluelobelia · 14/01/2026 23:26

A lot of undiagnosed FASD, I would expect.

TheGirlattheBack · 14/01/2026 23:38

flossydog · 12/08/2025 08:56

This highlights the harm in giving kids diagnosis-by-internet. Info about PANDAS is spread by online advocacy groups and isn't widely recognised by doctors. This leads parents into the hands of quacks and charlatans. For most children, a course of antibiotics is going to do more harm than good, and homeopathy is going to do nothing beyond the placebo effect.

This isn’t true though, my child has PANS and it’s fully recognised by everyone we’ve seen in the NHS from GP, paediatricians and CAMHS. There is also a clear treatment path, PANS is more difficult to treat than PANDAS but there’s definitely more substance to it than just desperate parents using Dr Google and internet quacks.

Diagnosis, recognition and treatment has come a long way in the UK in the last few years but there’s definitely more to do to dispel attitudes like yours.

TheGirlattheBack · 14/01/2026 23:43

OCDandUS · 13/08/2025 08:07

Can anyone recommend a dr who diagnosis adults with pandas please? Thanks

Privately, Dr Gareth Morgan, Immunologist. He works with both paediatric and adult cases.

DisposableName26 · 14/01/2026 23:59

I was tying myself up in knots trying to get to the bottom of my DDs issues…diagnosed ASD, displayed signs of ODD, PDA and ADHD although not diagnosed, as well as having experienced early childhood trauma. So I didn’t know which approach to take with her or how to deal with her. I wondered if she’d been misdiagnosed with ASD but her half sister has it and so do I so…

I spoke to a friend who is a psychiatrist and he said it doesn’t matter what the diagnosis is - he’s treated hundreds of children over the years with just about every disorder of the mind going, and he said regardless of the diagnosis, the treatment is the same. Fair, consistent, loving and kind parenting. Set a good example. Mean what you say. Make the child feel secure. That’s all we can do as parents.

That chat made me relax a lot and realise I’d got way too hung up on labels.

Lightwell · 15/01/2026 00:17

Hankunamatata · 10/08/2025 17:21

This is why rigorous diagnostic procedures are important. Our nhs journey involved lots of steps

#Indepth parental interview about development from birth - lasted 2 hours, #child interview,
#2 observed seperate play sessions, observed group sessions,
#school observation,
#Questionnaires for teacher, parents, any relatives who spent lots of time with child,
#medical assessment
Than a final diagnostic interview with 3 practitioners, one observing while they played and asked questions.

2 my children were not diagnosed asd and one was (other two were adhd but too young for that pathway at the time). My kids all had speech issues so were referred by HV as I didnt suspect anything.

Its why im so sceptical of private diganosis after being through our nhs diagnosis

Edited

But with all respect, (and our diagnoses looked like that too), a child with Pans Pandas may, as part of that condition, display all the behavioural traits, all the anxieties, all the sensory and social issues you see presenting in a thorough assessment. I think it is more than likely that many children are diagnosed with ASD, or indeed with eating disorders and OCD as the main presenting condition when really it is pans pandas, perhaps as well as, or layered onto, or exacerbating, ASD traits.

And yes, autism and adhd are meant to be present lifelong. They could have been present in the form of traits when the child was young - but, had they never become as extreme as they later did with other comorbidities (ie Pans pandas) the parents would never have sought diagnosis.

My daughter age 4 would not stop running around, was very demand avoidant, was unbribeable- would never do anything we wanted her to for a reward afterwards, it always had to be an upfront treat then she might do the thing. Was literal minded and obsessed with fairness. But none of those things to a degree that concerned us, because she was four. If they'd passed off I wouldn't have given it another thought. I see all those present in her autistic behaviour now, but I think almost everyone could pick out some traits of adhd or autism from their memories of their own children. So it makes the memories of early life section null and void really as it's just picking out the narrative thay fits how they are now.

But my main point is a bit different.

I would go further and say that autism and adhd themselves are diagnosed and treated in a stupid, blinkered way that gives no support for or thought to biomechanical issues. Medicine fails to recognise other diseases that look a bit like the same symptoms, and fails to address other elements of ASD and ADHD themselves, and our children are being hugely let down. Gaslit and told that it's their mental attitude that they can change for any symptom relief, not their poor little overstressed bodies.

I honestly think only an absolutely brilliant paediatrician with knowledge of Pans, plus OT, plus other functional medical areas, maybe haemotology, neurology, could diagnose properly. Such a person cross-specialism doesn't exist.

I am not saying that ASD diagnoses are wrong. But I believe the latest science of root causes- the genetic component PLUS the epileptic PLUS environmental stress on the cells all need to be present to create autism like symptoms that bother you in daily life.

I would say post-disease immunological inflammation is the very definition of stress on the cells so I am not surprised that children with Pans etc, plus a few autistic like traits, are diagnosed as asd.

The real problem is that once you've got thay diagnosis you get fuck all. Then it's game over for any neurological, haematological, macro nutrient investigation. It's all simpering CAMHS types saying "but it's due to autism, your child has to use the Zones of Regulation" When their brains are on fire with inflammation.

And don't get me started on B12 deficiency - the great undiscovered medical scandal of our age. Affects many many people. No clear test for it. Clinical symptoms, among others, EXACTLY THE SAME as the neurodevelopmental parts of autism. Sensory sensitivity.. Gut disorders. Oh and sleep disorder, hypermobility, sensitivity to light. And as with PANS Pandas GPs ignore you, you are stupid or making it up.

Nobody will treat children for it in the UK. It makes me fucking rage.

Lougle · 15/01/2026 06:34

Lightwell · 15/01/2026 00:17

But with all respect, (and our diagnoses looked like that too), a child with Pans Pandas may, as part of that condition, display all the behavioural traits, all the anxieties, all the sensory and social issues you see presenting in a thorough assessment. I think it is more than likely that many children are diagnosed with ASD, or indeed with eating disorders and OCD as the main presenting condition when really it is pans pandas, perhaps as well as, or layered onto, or exacerbating, ASD traits.

And yes, autism and adhd are meant to be present lifelong. They could have been present in the form of traits when the child was young - but, had they never become as extreme as they later did with other comorbidities (ie Pans pandas) the parents would never have sought diagnosis.

My daughter age 4 would not stop running around, was very demand avoidant, was unbribeable- would never do anything we wanted her to for a reward afterwards, it always had to be an upfront treat then she might do the thing. Was literal minded and obsessed with fairness. But none of those things to a degree that concerned us, because she was four. If they'd passed off I wouldn't have given it another thought. I see all those present in her autistic behaviour now, but I think almost everyone could pick out some traits of adhd or autism from their memories of their own children. So it makes the memories of early life section null and void really as it's just picking out the narrative thay fits how they are now.

But my main point is a bit different.

I would go further and say that autism and adhd themselves are diagnosed and treated in a stupid, blinkered way that gives no support for or thought to biomechanical issues. Medicine fails to recognise other diseases that look a bit like the same symptoms, and fails to address other elements of ASD and ADHD themselves, and our children are being hugely let down. Gaslit and told that it's their mental attitude that they can change for any symptom relief, not their poor little overstressed bodies.

I honestly think only an absolutely brilliant paediatrician with knowledge of Pans, plus OT, plus other functional medical areas, maybe haemotology, neurology, could diagnose properly. Such a person cross-specialism doesn't exist.

I am not saying that ASD diagnoses are wrong. But I believe the latest science of root causes- the genetic component PLUS the epileptic PLUS environmental stress on the cells all need to be present to create autism like symptoms that bother you in daily life.

I would say post-disease immunological inflammation is the very definition of stress on the cells so I am not surprised that children with Pans etc, plus a few autistic like traits, are diagnosed as asd.

The real problem is that once you've got thay diagnosis you get fuck all. Then it's game over for any neurological, haematological, macro nutrient investigation. It's all simpering CAMHS types saying "but it's due to autism, your child has to use the Zones of Regulation" When their brains are on fire with inflammation.

And don't get me started on B12 deficiency - the great undiscovered medical scandal of our age. Affects many many people. No clear test for it. Clinical symptoms, among others, EXACTLY THE SAME as the neurodevelopmental parts of autism. Sensory sensitivity.. Gut disorders. Oh and sleep disorder, hypermobility, sensitivity to light. And as with PANS Pandas GPs ignore you, you are stupid or making it up.

Nobody will treat children for it in the UK. It makes me fucking rage.

All 3 of my daughters are diagnosed with ASD. One of them is on B12 and another is on different B vitamins.

Lightwell · 15/01/2026 10:09

That's good to hear @Lougle . How did you find a gp to agree to the injections?

flawlessflipper · 15/01/2026 12:12

@Lightwell I have 2 DC on B12 injections initiated by a hospital consultant. One of them also has folinic acid infusions.

Lightwell · 15/01/2026 13:28

This is good to hear that they do sometimes do it!

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