So is my DS neurodiverse or not?

[Petunia23]

Around a year ago, my DS's school suggested they saw traits of ASD in him. He was 7 at this time. Due to this, myself and the school filled in the relevant paperwork to get him assessed through the NHS (CAMHS). I received a letter from them in reply stating they had received the form, but we were looking at a 3 year wait. Due to to this, I paid for my DS to be privately assessed, it cost £3,000 and he was diagnosed with both ASD and ADHD, with ADHD being his primary diagnosis. We're currently exploring the possibility of medication, but again will need to seek the prescription privately. It is clear to me, now my son is 8, that he is clearly neurodiverse (though admittedly happy and currently doing well at school academically).

I had not taken my DS off the NHS list because I was hoping to transfer care and not have to continue to pay for everything, so they are not aware of his private diagnosis'. I have just had a letter from the NHS (CAMHS) today, saying my DS does not meet their threshold for any developmental condition or neurodiversity and they will not be assessing him.

AIBU to think it's poor that my DS has been dismissed by the NHS and CAMHS? They are clearly letting children down and I am fortunate enough to be in a position where I can afford £3,000, there are many who cannot!

CAMHS flagged possible adhd in my son when he had a mental health crisis. They suggested I sought a private diagnosis as tenor waiting lists were around 3 years and he may not have met their criteria for being assessed- not because he wasn't likely to have adhd but because he wasn't struggling enough (which is baffling as he was struggling with life in the extreme).

We sought a private diagnosis and was diagnosed with severe combined adhd. His presentation includes masking behaviour and he had been performing well at school albeit whilst being extremely anxious, with low mood and exhaustion from the masking.

The understanding that came with his diagnosis has been transformational to his mental health. Meds have helped too, but not drastically.

Once diagnosed Camhs allowed him to join their pathway for titration and his meds have been managed by the local Camhs adhd medication team. They accepted his diagnosis without question. Maybe because it was carried out by one of their own team but working in a private capacity.

Please don't equate a bright child who is doing well academically with someone who isn't struggling with their mental health. I accept the Camhs are overstretched and so overlook these young people as they have to ration their services, but they do still need help and care.

@Molto, I agree with you.

When DS first became unwell (before adhd was on our radar), cahms turned him away several times as he didn't meet their criteria for help.

I knew he was really struggling and unwell but they explained that they can't help everyone and their first few letters even said 'mum seems overly anxious'. They even said this when he was brave enough to admit to suicidal ideation and said he didn't feel safe and was begging for help.

They told me that their criteria was that he had to be a 'clear and significant risk to himself or someone else'. Apparently making plans to end his life didn't meet this criteria.

I managed to find a private adolescent psychiatrist who saw him and said he was too unwell for her to help as he was in crisis. She packed us straight off to A&E herself with a letter outlining her thoughts.

After this he was accepted into the system.

Thank god he is now a great deal better.

I'm not blaming Cahms specifically. It is more complex than that. They don't have the resources that they need. There are some wonderful caring professionals within the service. There are also some battle-worn, tired people with compassion fatigue working there- but TBH that is understandable.

The whole thing is a shambles and I am ashamed to live in a country which treats its young people like this.

You will discover the neurodiverse pathway is long and windy! My friend's son was assessed on the NHS around 8 - he actually came back as NT which my friend was delighted with but secretly shocked - he had taught himself Japanese numbers at the age of one (they are Spanish but were living in Japan when he was born), he had zero friends, zero eye contact, monotone voice and spoke to us in TV adverts jingles when he tried to converse. In high schools they reassessed him as autistic.
If you have the funds I would do two things privately - find a very reputable autism service so you can be confident in their findings and get him an educational phycology assessment for advice for the school as to how to help him. Especially important for improving his exam conditions.
And yes, unfortunately if you don't have funds I can imagine it is sadly a lottery for assessments for people with neurodiverse children. Even health insurance cover some mental health assessments but not autism or ADHD.