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

[Dontyoujustlovethebritishsummertime]

When it could really be Pans/pandas?

I really can't believe this. ADHD diagnosis requires putting your child in the spotlight and a very careful evaluation of their life and medical history, social history, etc, is taken. You have to engage with a lot of professionals you could avoid, and would probably want to if you had something to hide. With supports, this holds true going forward as well. It's not a good way to go unnoticed!

The parents who present for ADHD evaluation are usually very concerned, caring and involved parents who have to work hard to go to bat for their child.

Exactly it's just another transparent way to try and get people to believe children are being overdiagnosed yet here i am with an obvious adhd child over five years down the drain no diagnosis not because he doesn't have issues because the system is backed up it's too late for help in his GCSEs now those are past he really struggled badly not because he isny bright but because he isn't medicated and he really would benefit from this he also has dyspraxia but getting that diagnosis has proved impossible he has suffered massively with hypermobile joints no help there either we have quite frankly given up he will be 17 this year what's the point? He won't be able to work to where he is capable in life because no-one will help him

It's a fucking waste but these people claim every kid is overdiagnosed and the parents are just out for the DLA which justifies the government's attack on the DLA/PIP system

The can be an emerging picture with ASD and ADHD, which is clouded by LDs, though.

With DD1, I was told I was neurotic because even as a tiny baby, I was saying there was something not right with her development. I was literally told "Lougle, every baby is different. Stop being a nurse, stop reading the textbooks. Be a mother and enjoy your baby."

DD1's behaviour was so hard to manage. She was completely wired. She didn't sleep at night for the first 12 weeks. At all. She would scream from 10.30pm until 7.30am. After 12 weeks she started to settle at 6.30am, then 4.30am, then 2.30 am, etc. She couldn't support herself well, but when she learned to crawl, she would escape as fast as she could. When she finally walked (late), she could climb before she could walk properly, but she was very wobbly and had some very near misses when she climbed on top of things and almost fell off.

She was identified as being 'behind' at 2.6, then started falling over spontaneously. Then she was diagnosed with epilepsy. From there, she was diagnosed with global developmental delay. A CT scan was normal, I was told smugly by the paediatrician. However, a few months later, the MRI scan showed a brain malformation.

For the next 11 years, the paediatrician (who had a special interest in ASD) occasionally pondered whether she had just an LD, or whether she also had ASD. Her learning needs took priority. However, by 15 she had an eating disorder, partly as a result of COVID changes. After that, she was put on the ASD assessment waiting list and eventually diagnosed with ASD.

She clearly has ADHD but we can't get that assessed because it's too unclear how much her brain malformation and learning disability affect her attention. She has a very low attention span.

DD1 is considered very autistic with co morbid mental health difficulties and she will never live independently.

I guess what I'm saying is that the path to diagnosis is complex and unless a child has classic ASD with overt presentations or a clear regressive history, it's not a simple diagnostic procedure.

Exactly this. Autism and adhd are under diagnosed in this country.

Both can be hugely hereditary which shows up during diagnosis as does helath and a complete history.

Yes it’s simply yet more autism bashing.

It doesn’t necessarily matter what combination you label a person with, what matters is that children have appropriate education, medical and or social support as required and crucially we have appropriate expectations for their futures (never assume they can’t because of x!) i actually think a far bigger problem is we have gone too far and are giving labels to normal variations in human personalities which some people are then using to limit their dc in some way eg they can’t do x because of x diagnosis as opposed to saying they can do anything with extra support potentially. Even sending kids to special schools is worrying because they lack academic rigour so often - I fought my council and won, my dd now has two degrees

I think you need to realise your daughter doesn’t speak for all children.

"they can’t do x because of x diagnosis as opposed to saying they can do anything with extra support potentially."

This sort of thinking is what landed me in a 'Team around the child' meeting that was a complete waste of time. It was spent asking DD1 what she wanted to do when she was older, then everyone clapped and cheered and drew her answers in picture form on an A0 piece of paper. I was only allowed to say positive things.

So now I have a massive piece of paper in my drawer that says she's going to be a vet (she has significant LDs and can't be safely left at home alone at the age of 19), in America (they wouldn't give her a visa), and she's going to save all the animals. Meanwhile, I would have quite liked to address how we were going to get her to adequately meet her hygiene needs, be safe in the home, and cope with group activities.

It's a privilege to 'tap into potential'. DD1 would have drowned in a mainstream school.

I agree - I think it’s important to bear in mind that there is no single test for ASD but rather a best fit from an array of behaviours/difficulties. Many of these behaviours are also indicators of other issues for example acquired brain injuries- (which occur much more frequently than is commonly thought.) and trauma and attachment issues etc. Many of these needs can also present from early childhood and be triggered later on by circumstances and increasing demands .

I work across several areas of SEND and I think that ASD is sometimes being used as a diagnosis to cover a wide range of needs. - just because someone meets the threshold for a certain set of behaviours doesn’t mean their presentation isn’t down to some other cause. And in some ways it makes no difference as often the support and strategies implemented would be the same/ similar.

And sometimes you have to be realistic and realise they can't do x because of x.

I have three degrees. My DH has three degrees. So what? We're still autistic (or what would have been Aspergers if we'd been diagnosed when young). We just have an autistic profile that allows us to get degrees.

I also have a very intelligent 20 year old who couldn't cope with university right now due to the challenges with their autism. It would be really unfair to not love and accept them for who they are and accept their limitations. Maybe one day they will be able to go to university or do something else, but this is not the time. Instead, I work hard to make sure they have every opportunity to develop and grow to maybe, maybe, one day be ready.

People aren't getting diagnosed because of personality quirks. It's a very wide and intensive assessment.

Then you should know how developmental history forms a big party of diagnosis.

Thank you OP.

I'd never actually heard of this but appears to fit one of my DC. I could never understand why his behaviour changed suddenly. He has a dual diagnosis of ADHD and OCD but over the years has grown out of many earlier symptoms which I know can be the case for some.

I'll look into it!

The correct diagnosis is really important. My son was diagnosed autistic age 7 but my concerns about adhd were ignored because he sat rigidly quietly during assessments I.e. his anxiety overwhelmed everything else. I wasn't believed that at home he sang, climbed, jumped, talked etc constantly.

It took burnout and huge school based anxiety to finally get the adhd assessment. Adhd meds have made a massive difference to concentration and anxiety but have come too late to heal the damage caused by years of school issued. Hes 4 years behind despite being bright and capable.

I think it's often both which makes symptoms worse. SIL's kids are definitely ND (one diagnosed) but not really severe. They still go to mainstream classes at school and have no learning issues. However the only way to keep them quiet for more than 5mins is to give them screens and/or sweets which they've resorted to as there are no other options. Nobody in the family is interested in interfering because it would mean trying to personally keep the kids entertained which is really difficult. At a recent family event, the 4 year old had about 8 hours of screen time the entire day and a phone in her hand virtually all the time. Everyone can see it's not ideal but what's the alternative?

There are whole generations who learned to behave without needing a screen. Plenty of alternatives.

Kids these days are seldom without any stimulation. We sat in the car and looked out the window, we might have talked. Kids now often have screens to watch in the car, on the bus, in the train, in doctor offices (instead of reading or being read to). Kids just don't know how to be bored or unstimulated anymore. We came up with some great creative ideas when 'bored' for a short while.

I know that's a generalisation and doesn't apply to everyone, but kids are so stimulated constantly. Brain down time is a good thing.

Isn’t the alternative that the adults engage with the kids as much as possible, and encourage them to play with each other without adult support too?

I am not judging your SIL or your family at all btw - I totally get that screens are sometimes a necessary evil. But I’m genuinely wondering why just letting the kids play / playing with them as much as possible seems to be completely not an option? What happens if they don’t have a screen? Are they destructive or something?

Completely agree

I have seen this is true. Trauma is always diagnosed as something it is not. I have seen it.

Nothing makes them vulnerable to abuse aside from being in the vicinity of abusers.

Absolutely you are correct with the last line - doesn't mean they have ADHD but they get that diagnosis! So why are they getting that diagnosis?

Labels go in trends. In 10 years ADHD will drop in diagnosis and something else will feature heavily instead. The history of diagnosis has followed this pattern for many decades.

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.

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.

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.

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.

100%

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.

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)

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