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

[Dontyoujustlovethebritishsummertime]

When it could really be Pans/pandas?

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

Source?

Re labels

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

So sorry, do you still have it?

You have no idea, thousands upon thousands of poor families, it’s not some Fb group or whatever, please don’t be so dismissive and pray you’re never in the same situation

What is your evidence for this?

The families in this situation?!

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.

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.

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.

There are many in the same boat, poor children and families being completely failed. So sorry you’re in this situation 😢 I know of fantastic support groups if you need extra help

@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.

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.

It’s crazy and you as a mother just know your child, progress is very slow, many Drs aren’t knowledgeable about this at all
My child only shows these behaviours following illness and has had periods of 8 months plus without and being a *Typical child. It’s brain inflammation and an immune response
Dm me and I can pass on WA groups etc X

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.

This is all so true!

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.

As far as the conditions of life you mention in your first paragraph, it could also be that more autistic children are getting diagnosed due to these difficult things to deal with having increased. Those who may have been able to get by under the radar in the past in a quieter, slower world maybe not able to do so as easily in the modern world?

as a parent of a child diagnosed with ASD, I'd say the real issue is that people with all sorts of SEN are at the moment being tossed into ASD. Mine is clearly MLD not ASD but what a decade it took to get anyone to admit that. There are fashions in these things it seems

I believe many with trauma are. I have seen abusers push for an ADHD diagnosis to prevent trauma being exposed.

Doesn’t take long if you pay

I don't think this is true - many women being diagnosed generally will have suffered trauma directly linked to their ADHD. They may choose unsuitable partners who may abuse them, they could be people pleasers and end up in difficult scenarios, make themselves vulnerable due to poor impulse control, likely to be anxious/depressed with poor self esteem which makes them vulnerable to trauma. It doesn't mean they don't have ADHD.

They could also just be small humans aka children

Pandas mum here and yes, absolutely this

I am in my sixties and last year I was informally assessed as probably having ADHD and possibly ASD too. It was such a relief to have some understanding of why I had been struggling for years. I was referred for a formal assessment and told the wait was about 18 months. I recently chased this up to see how my referral was progressing and was told the wait is now 40 months!