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

[Dontyoujustlovethebritishsummertime]

When it could really be Pans/pandas?

I think it would be harder to get away with abuse, because there are so many eyes on my autistic ds. Aside from seeing OTs, SLTs, there’s his SNA, the Senco, and various teachers have him on their radar.

I've asked this before, and this is a little bit of a thread hijack, but I would love if anyone has any information on how they determine what's autistic behaviours and whats learnt behaviours (from parents, trauma, family life etc) when assessing people and how that then informs the final result.

What is the treatment for Pans/Pandas? Is there any?

Trauma also has a lot of identical symptoms to ND but that isn't talked about much either.

This is the big question-parents try so many things-antibiotics, homeopathy, anything to bring inflammation down, ivig

Well it a nuanced issue. Everyone has mental health and physical health and barriers to study/learning, and it can range from needing more revision and vidoes to a condition that they need treatment for. You can talk about being confused by instructions but not equating that to ADHD.

So I think we instinctively react differently when it's mental health because sometimes, even unconsciously, it's still taboo. Only very little money (8% of the total NHS budgey) goes towards mental health and additional needs. Many more people are struggling (especially with longer wait lists) and are often not properly treated or given help on the NHS.

Also people can feel they can't talk about when they're struggling sometimes so like to drop hints, because there is still plenty of stigma. Obviously not everywhere and there is a problem with health misinformation (women and girls weren’t thought to have ADHD, and autism for ages and ths clinical studies and trials only included girls for the first time in the early 2000s). That has an impact as teachers and professional need training on the different presentation of such conditions in girls as do parents etc. But also the increase in discussion about mental health and other condition e.g ADHD in girls which initially was never researched in studies because they thought girls didn't have it and now we know they often present differently has helped many get diagnosis. When they were struggling their whole lives but didn't get the right support. Also cultural issues mean both BAME boys and girls get underdiagnosed (Black boys are overdiagnosed with ODD and schizophrenia when they have autism and ADHD so they get more aggressive medication - antipsychotics instead of the support - links to racist stereotypes about Blaxm boys being more aggressive and violent and adultification where because they look older they aren't treated as they should be for their age developmentally). The same for BAME girls we know they are underdiagnosed for SEN conditions as well.

We didn't get any observed play sessions or a school observation. I also got cut off when I mentioned ADHD as the specialist said DS had managed to sit still but the older he gets I feel like he definitely has inattentive ADHD, so sitting still wouldn't be an issue. Felt like just a tick list by someone who wasn't overly knowledgeable.

I don't dispute he has autism but our process didn't feel particularly rigorous. Just worth noting different areas might be different.

Just glad it’s not another asd bashing thread. Interesting post op.

Most definitely not x

This isn't true, it's literally in the criteria that symptoms have to be present as a child and that's why parents and schools (where relevant) are asked to be part of the diagnosis process.
For example, I am diagnosed with Autism and ADHD. ADHD can present very similar symptoms as CPTSD so during my diagnosis process I had to have a very detailed assessment on my childhood behaviors, discuss the traumas I have been through (in so much detail it was genuinely distressing) and then talk about the work that I have done to heal that trauma. We also looked at the different symptoms presenting childhood vs adulthood. All of that was so my psychiatrist could ensure he was making a correct diagnosis.

It is true, many many families I know are in this horrendous position, when their child is not autistic

The costs of having the diagnosis, SENS and EHCP 's that often follow are bankrupting councils, we don't want to pay more tax either...

Numbers are going through the roof, its totally unsustainable, people get a EHCP but then the council don't even have the people/funding in place for it.

It might better to ask Why? What are we doing wrong, if anything?

100% agree.

I agree with this and with the fact covid pandemic contributed to behavioural issues, heightened stress, anxiety and trauma which can manifest in different ways.

To be clear, I don't believe ADHD and ASD are made up at all, I have close family members who are ND and I suspect I am too (albeit undiagnosed and I've always coped with life). But I do believe in some cases the private diagnosis can unfortunately be Mickey Mouse, I've seen this with my DH and I'm positive this must happen more frequently as parents are desperate to get diagnosis quicker and avoid huge waiting lists.

I also think that increased awareness comes with more diagnosed peope naturally.

So it's a mixture of things, but yes, some people are being misdiagnosed.

But yet equally I could give examples of parents I know where the opposite has happened - for example a family member who's child had a traumatic birth and therefore had brain damaged came to be absolutely convinced their child was autistic. They were assessed several times and it was confirmed they have learning difficulties but not autism. I also know several families who have initially been rejected for autism/ADHD screening only for the child to be assessed and diagnosed.

Are diagnosis always perfect? No because as much as there is a science to it, there is an element of subjectivity to it. Could there be cases of misdiagnosis? Absolutely, statistically speaking that could and will happen. However knowing some people who have experienced a certain problem is VERY different to claiming many many people are getting misdiagnosis, especially when we are still at levels of underdiagnosis for Autism and ADHD.

Many, many of these children are getting misdiagnosed. If they are lucky enough to respond to antibiotics or other treatments, many of their symptoms go away, this is not autism/adhd

The costs of having the diagnosis, SENS and EHCP 's that often follow are bankrupting councils

The legal definition of SEN and EHCPs are based on needs, not diagnosis. A diagnosis isn’t required to meet the definition of having SEN or get an EHCP. And a diagnosis alone doesn’t come with funding or meet the criteria for getting an EHCP.

Also, LAs don’t go bankrupt in the same way as a member of the general public does. They can’t be declared bankrupt like the general public can be. Rather than bankruptcy, it is a section 114 notice.

Calling a significant medical diagnosis a label sounds dismissive. The diagnosiis report gives lots of information on the patient’s difficulties and strengths, making it easier for everyone around them to understand their needs. Due to their understanding of autism and their skills, the clinicians will uncover issues that the patient and their family either hasn’t noticed or hasn’t understood.

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.

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 developed OCD as a result of this

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.

By who?

Have you been through the process?

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

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.

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