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

Evidence. Not anecdote. Where are the studies showing many children diagnosed as ND actually have PANS/PANDAS? When people can't even yet agree what it is!

"Lots", "many", "many many" is very vague; what are you even claiming? Hundreds, thousands, 50% of children diagnosed as ND, or what?

If we're going by anecdote, I know hundreds of children diagnosed as ND, and none of them act like they have the symptoms of PANS.

So just because you have concentrated the relative few (and that's what it is, in percentage terms) people who think their children have PANS despite an autism/ADHD diagnosis (whether they actually have one, the other, both, or neither) in a group, doesn't mean this is a big issue in the ND community in general.

This is all so true!

Could also be sensory processing differences as apposed to adhd or autism too.
my child had an adhd assessment and was told he had sensory processing disorder, I’d never actually head of it but the symptoms are very similar to adhd and autism (he was told he was neither of these and has sensory processing disorder as a stand-alone condition.)
some of the symptoms are

impulsive
vocal stims
unable to regulate emotions reacts to the smallest things and can have big meltdowns.

cant tolerate certain foods , clothes
needs routine.
Constantly moving/ banging into things, spinning ect
cant cope with bright lights/ noises ect.
extremely high or low pain threshold .
fidgeting
these are only some of the symptoms but I wonder if sometimes with symptoms being very similar if kids are getting diagnosed wrong.

It's always good to consider alternatives. I do have an autistic child who would fit in some ways (not at all OCD though). I looked up PANS/PANDAS and it says that this usually does resolve itself. So I do wish this was what my child actually had.

But looking back, there's a long intergenerational history of obvious ND on both sides of the family (usually undiagnosed), so it's unlikely so many in the family have PANDAS rather than something more genetically based, like autism. Also, when there's more than one sibling or a parent diagnosed with autism, I think PANDAS is less likely.

It's good to keep an open mind and maybe someone will find an answer for themselves with your post, OP.

@Dontyoujustlovethebritishsummertime yes I would love some recommendations please or Facebook groups. For me This isn’t a case of being a parent who isn’t willing to accept their child is autistic ( I have a lot of professional experience working with families and young people who are autistic ) but it just doesn’t completely sit right with me that enough time ,attention or resources are not given to explore the possible “reasons” for the symptoms and also if there was another chance to reduce my child’s very hard life than what I am doing then I would absolutely grasp it. I had an appointment recently with a paediatrician who claimed to have interest in neurodiversity who was aghast that I was giving my child some additional supplements ( nothing crazy ) and said it was all a con, it has nothing to do with autism , waste of money etc etc and when I mentioned the repeated strep infections as a baby/ toddler they asked why I thought that was relevant and I explained they were very rude and clearly showed little interest or knowledge in even wanting to explore any other factors that could be impacting the everyday behaviours we see.

Sorry, my post isn’t very relevant now I’ve read the OP properly! I somehow missed the bit about being misdiagnosed for something else. Apologies.

It’s complex and multifaceted and there is no easy answer. One personal anecdote I have though is my son, who is now nearly 13, was ‘tricky’ in nursery and reception. Delayed speech, found social situations difficult, was quite physically challenging and got into scraps easily. Didn’t like some sensory stuff like sand, was funny about certain food textures etc. School (he was in the nursery class of a school) suggested many times I should think about getting an assessment for him, I am in education myself and felt he just needed more time. School were adamant he’d get a diagnosis. I held firm as I honestly didn’t think he needed one, and sure enough he is now absolutely fine. Loves a beach holiday, has lots of friends, is outgoing and happy, eats everything bar a couple of things, totally fine. I do think he would have received a diagnosis aged 3-6 for sure. But he didn’t need one.

I’m here for This! Whereas I have had no professional willing to discuss , engage or consider anything other than “ just” autism diagnosis. Whereas I know my child had multiple strep infections as a toddler and I was almost laughed at when I suggested it and given the pans/pandas is not a really diagnosis comment, child is also vastly more settled when has a fever - the fever effect which to me indicates inflammation.
i would love some support with actual gut health, supplements etc as child also is very restricted eating so diet will be a Negative contributor too I feel. However other than read forums and Facebook posts about what others have tried I don’t know where to get help.

What is your evidence for this?

Re labels

I would imagine people who get diagnosed have spent their whole lives being labelled .... Just with less kind words that autistic!

Source?

In fact they go back beyond that: parent and sometimes even grandparent history. As well as siblings etc.

The diagnosis rate has increased from 1% to 3% from the sources I've seen, what data are you looking at?

Well the label got DS a place in a specialist autism base. No diagnosis no place.

It also have him an explanation for his behaviour - it meant he wasn't a bad person, which is how he felt because of the meltdowns - and his social struggles.

The incessant over diagnosing is creating a nation of debilitated, dependent adults. Those who are being over diagnosed are being put on the scrap heap while those who are not are looking for how they can find a label for themselves. This dangerous phenomena is getting out of control.

By who?

Have you been through the process?

They go right back to PREGNANCY and birth for collateral history!

These "many" cases you are talking about are anecdotal in some Facebook group or whatever. They would not be a high percentage of autistic children in general.

It's not even a diagnosis with a broad consensus, and it's more similar to OCD (in fact some consider it a subtype of OCD) than autism or ADHD. And it may be overdiagnosed itself! Especially when some parents don't want to accept their child may be autistic, and hope there is a "cure" (i.e. antibiotics).

I don't think it's anywhere near as big a problem as you are implying, so YABU.

I developed OCD as a result of this

Theres a very thorough history taken that includes everything from pregnancy and birth through medical history, family history, milestones etc etc. They ask questions on all sorts of things like alcohol use, DV, social stuff like moving house or close family/friends dying etc. Although it is of course possible that someone would lie about traumatic experiences this is probably rare. They also ask for info from school/nursery,.any other professionals involved etc.

There's documented ways of teasing apart symptoms like the Coventry grid too.

I was really shocked at just how inadequate the assessment was for my daughter’s diagnosis. And being a stroppy teen she really didn’t want to play ball with the nurses doing the assessment as it was so very infantile. I have really wondered about whether there are targets to meet for diagnosis.