DS assessed for ADHD twice - no diagnosis both times AMA

[CosmicVoid]

While it seems like everyone is getting diagnosed with ADHD these days, my DS has been assessed twice and both times we were not given a diagnosis. AMA

Why did you go for the second diagnosis?
Do YOU think they have ADHD?
If so, why di you think they are not being diagnosed with ADHD ?

Did they give any alternative diagnosis or signpost to support?

Did they give any explanation for his symptoms?

Were both assessments private?

Yes, I did think he had ADHD and partially still do, kinda - it’s made me question a lot about AuDHD

Essentially, I thought he had ADHD but the assessors felt his behaviour was better explained by ASD.
Following ASD assessment, he was given a diagnosis of ASD but we were told he also displayed behaviours not explained by ASD so a second opinion was requested.

The reason for no diagnosis of ADHD the second time is the same - all his behaviour can be explained by ASD

We have been given a diagnosis of ASD

And following the second assessment we’ve been referred for further support around sensory issues

No both assessments were NHS. I do question whether going private would give a ‘yes’ diagnosis.

The explanation for his symptoms in general is ASD but more specifically extreme sensory seeking behaviour and a lack of understanding around appropriate behaviour

Did he have a proper full assessment for adhd both times? My sons autistic and ed psych when he was assessed for ehcp verbally recommended getting him tested for adhd. Doc did referal but we were rejected at the referral stage as they said issues could be explained by previously diagnosed autism so he never did get assessed at that point in time.

What questions did they ask you/him as part of the assessment?
And what details did they go into about your/his past?

Yes, he had a full assessment both times.

He was initially referred for both ASD assessments when he was in Reception. The first ADHD assessment was in Y2. The ASD assessment and request for second opinion on ADHD was Y3. The second ADHD assessment was concluded in Y7.

Why does it matter? Do you think he doesn’t have ASD?

I take it you are pursuing an ADHD diagnosis because you want him to have the option of ADHD medication? Otherwise there is no support available for ASD or ADHD as far as I can see on the NHS

Maybe he doesn’t have adhd?

The main issue is if they have adhd and aren’t diagnosed is that there is no medication option.

asd there is no medication available anyway. My sons is diagnosed asd and we were turned down for adhd referal years ago as they said issues related to previously diagnosed asd without even seeing him. I wasn’t overly bothered at the time as we didn’t want to medicate and he had one diagnosis already which assisted with getting his ehcp/specialist school etc. now years later adhd has come very much more obvious and is causing major issues and I am interested in medication and am now having to start the referal process.

Are you saying that you think the sensory seeking issues/lack of understanding around appropriate behaviour are the things that you perceive to be symptoms of potential adhd? As someone who does have adhd, I wouldn't say that these are particularly obvious symptoms, and it seems reasonable to assume that autism could also cause these.

Does he have other more typical symptoms of adhd alongside the things that you have mentioned? What, specifically, makes you think adhd?

But you do have a diagnosis... Just not the diagnosis you want for some unclear reason

I can’t remember every question as there were lots of questions. Some obviously related to symptoms of ADHD like ‘does he lose things’ and others that I didn’t know how it related. I can’t think of an example

There were also questions around pregnancy and birth. They didn’t ask many questions about my past other than around pregnancy really. We did speak a little bit about my past medical history and the fact that I am also diagnosed with autism

No, I agree that he has ASD, I didn’t see it at first because he’s very different to myself and my other child who also has ASD

It matters because I worry about him and his safety. He is very impulsive and has risky/dangerous behaviour and I hoped there was a medication that might help.

Yes, exactly

Just to say there is another thread by a mnetter about running an ADHD / ASD assessment service which you could ask there as well.

https://www.mumsnet.com/talk/AMA/5308011-i-run-an-adhdasd-assessment-service

I find there is a gap between diagnosis for autism and for ADHD.

In my dd's case, she was diagnosed with autism. When I raised the issue of possible ADHD, the developmental paediatrician (not entirely sure what her title is) said that falls under CAMHS and she could not help. It is really not a joined up service when those 2 conditions are co-morbid.

I am puzzled why does ADHD come under mental health when it is a form of neuro-diversity? We did not pursue a ADHD diagnosis in the end for dd.

In the case of ds, he is suspected ADHD. I could not be bothered with the lengthy process at CAMHS so ds is going straight to private in order to explore medication if he is diagnosed.

Yes, so for example he finds it hard to sit still. I saw all his constant movement as an indication of hyperactivity, but I’m told this is sensory seeking behaviour.

My main issue is what I see as impulsive behaviour, for example attempting to exit a moving vehicle, climbing out of windows, running off, throwing items, smashing items, eating non food items, and so on. These behaviours they’ve explained are not understanding appropriate behaviour.

Then there is not listening, and inability to follow instructions - I see this as lack of concentration, I’ve also been told by school teachers he doesn’t pay attention and needs to be kept on track. Easily distracted. I was told this is also ASD, the phrase used was ‘following own agenda’

Then there is losing stuff - he loses everything. Completely disorganised, total chaos. He can have his school bag in hand in the hallway lose it by the time he’s walked to the car. I was told this is executive dysfunction which is also a part of ASD

Massive difficulty with emotional dysregulation - which actually I’ve always thought was ASD but all the videos you see on social media seem to suggest this is also a big part of ADHD.

Literally any symptom of ADHD can also be ASD

The reason is I want the right diagnosis. After his ASD assessment I was told not all his behaviour was explained by ASD - that’s why I sought a second opinion. At the second opinion they disagreed and said all his behaviour can be explained by ASD. I’m fine with that - kinda, I just don’t understand it.

OK, that makes more sense now. I can see why you would think adhd. But if he has been assessed twice and not diagnosed, I guess they must have their reasons for thinking that adhd doesn't apply? A lot of people seem to be diagnosed with both...

@CosmicVoidmy DH is diagnosed ADHD and also had 2 assessments for ASD but they concluded he shows many traits of ASD but not enough to be diagnosed. I think there’s ones that stick out a little more that they look for. For example, he doesn’t have ASD as although he doesn’t show much empathy, when his grandad died he was distraught - so he doesn’t have it apparantly as he’d have no emotion🧐 my brother on the other hand got both ASD and ADHD diagnoses both the first time round when he was assessed and his is way more ‘full on’ than DH. So I think if it’s not raging extremes it’s hard to be diagnosed😖

Did he do the qb test that says positive or negative