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

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.

Children and young people with autism and ADhD are also at higher risk of experiencing trauma because of their conditions.It needs to be remembered that trauma experienced by ND young people is harder to treat.

We do not live in a ND world at all. That declaration in itself raises red flags

Re safeguarding, I have never ever experienced views like that. If anything a ND diagnosis brings more awareness of vulnerability as it’s well known ND children and young people are at a higher risk of abuse.

This is difficult isn’t it! At what age do you think his behaviour became more ‘normal’. I think we do expect quite a lot from toddlers / preschoolers these days.

I think things like PANS/PANDAS as a possible alternative to autism also gives false hope and attracts vulnerable parents to support groups.

We have a huge family history of autism - its clear going back generations as well as more recent formal diagnoses. One of my relatives can't cope with their child being diagnosed autistic. They have spent years cycling through various other possible diagnoses and treatments- homeopathy, dietary and supplement changes etc. They are desperate to find a cause that is theoretically curable instead of autism. I'm actually really glad they haven't yet come across this yet, as I thibk they would get sucked in.

That isn’t true. Trauma isn’t always diagnosed as something it isn’t.

While many experience trauma, which can be normal throughout life, how people respond to trauma or see trauma or what they perceive as trauma can be abnormal and lead to a diagnosis. It is wrong to say otherwise.

If trauma never needed to lead to a diagnosis there wouldn’t be national CAMHS services set up to to assess/diagnose/treat DC with trauma.

Yeah and I'm the person who you'd refer to and would make decisions. I don't agree but you obviously have seen at least one instance to make you think that it's easy to do that.

Not unusual in my experience. When working in safeguarding it is very common. We live in a ND world as all are ND.

I admit from your thread title I came in ready for a battle, but while I don't believe autism/ADHD are commonly being misdiagnosed I do think there should be far more awareness raised about PANS/PANDAS.

I am autistic with ADHD, as are many of my family and friends, and we've all had pervasive symptoms from early childhood. From birth, probably. In fact, I don't know anyone either diagnosed or suspected who hasn't had lifelong traits. The diagnostic process is designed to weed out sudden-onset cases, and it seems to work quite well.

I'm not saying there aren't cases in which PANS/PANDAS could be misdiagnosed as autism/ADHD. I think a more likely scenario might be that in some children, who have had lifelong autism/ADHD symptoms and therefore met the diagnostic criteria, may find something like PANS/PANDAS brushed off as a part of their pre-existing neurodiversity. Have it viewed as simply an unexplained worsening of symptoms, or the onset of co-morbid OCD. In general I think PANS/PANDAS needs far more research and far more awareness around it, because even if it's not misdiagnosed as autism or ADHD I get the feeling it goes vastly underrecognised.

Yes, was a bit worried!

I have heard of Pandas before and its similarity to autism. Mine showed traits from babies though.

That all sounds extremely unusual and doesn't gel with any personal or professional experiences I've had.

Sure there are always bad eggs but reputable professionals don't go being pressured into giving out a diagnosis and do know the difference between trauma and ADHD (granted having ADHD can be traumatic in a NT world).

I have seen more than 1. The one I am thinking of is very severe and very clear cut abuse case. The children were telling us X is happening, Y is happening. Displaying the most horrific sexualised behaviour I have ever seen.

Once that child was diagnosed then everything she said or did was attributed to ADHD and the carers were off the hook.

Not really because suspicions were growing about the carers and reports were being made to children services albeit being blocked. The carers had tried deflection onto others claiming they were the abusers but that got scuppered when the falsely accused could produce evidence proving them liars. They tried everything. Abusers will go to extreme lengths to cover their tracks.

Sadly other agencies also have reported abuse since and have been met with the 'nope said child has ADHD so it is not abuse' line. There was no mistaking the abuse as a child that age would not know what they declared without ever seeing it.

I have seen it with ADHD, trauma responses can easily be similar to the diagnostic criteria and given there is no medical test just opinion then it is easy for that to happen.

Absolutely it is as no diagnosis is needed for trauma. Trauma is a normal response not abnormal.

I think some children being diagnosed over a video link may well be misdiagnosed.

the NICE criteria for assessment mentions needing to observe the child, but it was written before covid.

i think it inherently meant that the assessor spent time in the same room as the child. Some assessment centres are playing fast and loose with how they interpret this, to make big profits.

I'm not sure it will happened with ADHD but I could see something happening with autism. To be honest, I think it needs to happen. It covers such a wide spectrum it doesn't carry much meaning. If someone tells me their child is autistic, I don't even know what that means. Are they in nappies at 20 or coming top of their class at university - or anything in between? I'd like that to be refined.

So you're talking about one specific case? That's not very scientific.

If I wanted to abuse a child, going for an ADHD diagnosis would be the furthest thing on my mind. There would be much easier ways and avoiding the whole process and the attention it would bring would be a priority, surely?

This was a few years ago
private wait lists are longer now
Maybe too many ppl have private healthcare

Really?

Because in a fairly large radius of where I live, the private wait lists are as long or in some cases closed.

If you chose right to chose the NHS assessment can even be a shorter wait (but doesn't suit everyone as not all ND people can cope with zoom assessments)

Haven't RTFT yet but it's an incredibly interesting discussion for me personally because I was diagnosed with PANDAS at 14 years old.

I STILL have, at almost 30 years old ALL the same symptoms I had when I was diagnosed with PANDAS fifteen years ago.

Symptoms include but not limited to: TICs, anxiety, food restrictions, sensory issues, insomnia.

Except there's no research into PANDAs still continuing into adulthood (as far as I'm aware). The key here being that it's paediatric. So where does that leave me?

My son is seven and has an autism diagnosis. We are very similar, but my symptoms are far worse than his. He doesn't have trouble sleeping or TICs, for example.

I don't think he has PANDAS. He didn't have sudden onset of symptoms. He's the same as he's always been and was diagnosed just after he turned six.

So, did I have and still do have PANDAS? Or am I autistic like DS? Or am I both autistic and have PANDAS? My symptoms did appear suddenly like the TICs, but I was always a quiet child with anxiety and sensory related issues.

It's very interesting.

Not an expert but I do know from a friend’s experience that PANDAS is very difficult to get diagnosed so raising awareness of it’s existence is good.

Trauma is always diagnosed as something it is not.

It isn’t always.

I have autistic DC with a range of co-morbidities. I also have a DS who isn’t autistic and doesn’t have ADHD, but has other complex physical, psychological, developmental and medical needs. His primary psychological diagnosis is PTSD (not related to abuse in any way). Trauma isn’t always diagnosed as something it is not.

I also have ASD and ADHD diagnoses and a cPTSD diagnosis. They can co-exist.

They become dysregulated extremely quickly and will either fight with each other or other children. The older one is prone to violence and has injured other children (including my DD) on previous occasions. However it gets dismissed as "oh but he's ND" so there are never any consequences. Fortunately we don't see them very often due to living far away so it's not really my business. I'm personally happier knowing he's occupied with a screen than potentially getting into another fight.

You can't believe that abusers would do this? Oh abusers will do anything to enable them to continue abusing.

As this was the 2nd set of abusers the child had lived with everything could be excused as being from the first set.

This set of carers were not concerned. They were concerned about deflecting and falsely accusing others of abusing the child to ensure that they were not the focus. Even so much as to take it to court privately to falsely accuse someone.
Abusers will put in a lot of effort. Do not mistake effort for care. Abusers will put in effort to make things happen which can be mistaken for care.