Is a formal ASD diagnosis really needed for a child already diagnosed with ADHD and supported

[11plusNewbie]

DD was privately diagnosed with severe ADHD and ODD traits over 1 year ago. Autistic traits were mentioned at the time. ADHD medication followed swiftly with very pleasing results
6 months later, seen once by (very rushed) NHS consultant who strongly advised to refer for ASD assessment
However, after over a year's medication, a fair amount of the "austistic" traits have subsided, which lead to think they were collaterals to the ADHD-now managed and anxiety (nail bitting for instance).
Needs have decreased rather than increased.
my understanding is once ADHD medicated the ASD traits are meant to stand out more rather than lessen ?

Can someone help with clarity please ?
I am struggling to see the point of getting ahead with a formal ASD diagnosis (awaiting a date in 2024) as she has a ND diagnostic already and we invest a lot of time educating ourself, advocating for her and trying to develop her skills, she is getting a lot of SEN support which is needs based in school, in external clubs and at home, and having done extensive research I cannot see any specific support that would come from a ASD formal diagnosis, but sadly I see a fair amount of negative points coming from having a formal diagnostic on your record, especially from NHS (medical, law, insurance, stigma. emigration).
I also see that self-diagnosing is very valid in the autism community and as there is no obvious positive benefit now, our energy is best spent supporting her and re-assess the need for formal assessment later, possible when she can make that call as at the moment, it seems to mostly restrict her life than help her.

We have a few months until the actual assessment anyway, but feel that I owe her to consider carefully the consequences as she is too young to make that call.

thank you

I would remain on the waiting list and go through with the assessment. Far better to do this now than waiting until DD is in crisis.

If DD has ASD, a diagnosis can help DD and others understand her better.

The majority of support is needs based, but there is a minority that is based on diagnosis. For example, if in future you look at special schools some autistic specialist schools require a formal diagnosis. In some areas, the autism specialist teaching service requires a diagnosis. Similar for some autism specialist youth clubs/projects/adult groups/services, some require a diagnosis.

Self diagnosis is controversial, whilst some with autism view it as acceptable, some do not.

How old is your DD? Just wondering if they are of an age where they can input into this decision?

My DC got an ADHD dx 18 months ahead of an ASD dx. Whilst ADHD meds controlled symptoms, the ASD dx has been the thing that has transformed our understanding of them, and the things that provoke anxiety.

Personally, (and I say this as a neurodiverse person), I think self-diagnosis is a tricky thing, as it so very difficult to see oneself or one's family members with any degree of objectivity. But I understand your concerns about stigma. Is a private diagnosis an option?

thank you !
@PassageDEnfer DD is just 7Y old and/so cannot be asked to make a decision on this, though she has an awareness of it as we read books, she knows the terminology around ASD and other things

I am not excluding diagnosis at all or forever, just thinking of saving it for a time that feels a little more "right" and my daughter has an input, and also the particular NHS team who would be assessing her has not inspired a lot of confidence in our exchange. For example when I raised the fact she would likely refuse the ADOS the MDA SaLT told me all children do it and it is very joyful... which is not factual at all, when I raised the issues like emigration I was told it did not exist ...
Also I see that CAMHS often rejects autistic people who have anxiety saying the anxiety comes from the Autism.

would you be able to explain how having the ASD diagnostic has helped understanding the things that provoked the anxiety ?

@BlueBrick our nhs consultant sent me a list of support accessible post ASD Dx and all she listed, we already have access because of the ADHD Dx only one is specific to the fact we are on the ASD pathway and that specialist provider has said that now we are on their books and identified as having communication difficulties then we would stay even if DD is not diagnosed (not meeting criteria or not accepted for MDA assessment). the only other thing is access to a parents training course organized by the council, but we'd be lucky to get it before 2025 !!! and having spoken to parents who have done it, it's not been found useful. we are not looking at specialist autistic schools, though. I have asked the rep of our councils local offer and it came back to the same.
due to the difficulties to getting an assessment, lots of those services are reasonably open to all ND due to the known overlaps.

It sounds worth looking afield than our London base, though. Thank you

Things can change a lot, especially on transition to secondary. For example, DD may not need a specialist school now, but she may at a later date and if you then preferred one where you need a formal diagnosis it would delay matters. Or funding may change which results in services/groups you use now or may use when DD is older changing their eligibility criteria to require a formal diagnosis.

I wouldn’t make the decision based on how you think DD will present during the ADOS. Even a refusal/inability to engage in some/all tells the assessor a lot.

CAMHS do sometimes refuse to see DC because of an ASD diagnosis, but refusing just because of that is unlawful and can be challenged. Also, if they don’t refuse because of ASD they often refuse for other reasons e.g. attending school, not attending school, not in crisis, not suicidal, has ADHD…

ADHD can also sometimes be a concern for emigration.

thanks @BlueBrick the reference about the ADOS is more that like that team does not inspire confidence really, saying that all children do the ADOS and find it joyful is simply not truthful so why say it ? It's rather dismissive of parental concern

Do you have example of countries or occurence where ADHD is specifically caused immigration issues ?

The case I know of involved Australia, admittedly their ADHD caused significant needs.

A formal diagnosis brings no additional funding, support or aids an application for an EHCP in any way.

Support is based on need and many with a diagnosis need no support.
If you are happy with the support already in place a diagnosis will change nothing.

However, depending on the time lapsed since the original diagnosis, the age of the child and any changes in behaviour it might highlight any new needs not previously evident.

@Annony331 thank you, you have articulated my thoughts better than me !! this being said I think it's more life, environment, circumstances, puberty that will bring on new needs or that will make us identify new needs
many thanks

In my borough you can access short breaks funding with an ASC diagnosis, but not with an ADHD one.

oh that's interesting to know
but I am not sure what you mean by short break funding ? like mini holidays or time off work or studies ?
thank you

Council fund a short break service for disabled children. Google your local Authority and short breaks. Info should also be on the LA's local offer page.