DS background - he had a number of medical issues until he was around 4 when things started to just go better, i.e. failure to thrive, heart murmur, 'weird' blood results etc. in a nutshell he had a number of issues that raised questions about different syndromes, but he never fitted anything in particular and as his medical health had vastly improved we agreed that he no longer needed to be in the care of the several medical specialists (including a geneticist from a major city).
Luckily, as I am in education I knew that I needed to stamp my feet very early on in order that his learning needs were met and he has been in receipt of a full statement since he was 5 and has attended a special school since. He has learning difficulties, signs of ASD, signs of ADHD to name a few and we have been happy that his needs were being met (his school is fantastic) and that there were no need to be concerned that his statement wouldn't continue.
I have though recently become aware of all the changes occurring in terms of support/funding etc (he currently receives DLA) and am getting concerned that he has no formal diagnosis anywhere on his medical records of his needs and therefore would be classed as a 'vulnerable adult' and at risk of not gaining the full support he needs when he leaves eduction (he is currently 13, therefore would be year 9 in mainstream).
I am therefore going to go through the mill of doctors, specialists again - just sat here now before we go to the GPs (who have also been fantastic with him) to ask for a referral to gain some form of 'label' on his records.
Just slightly worried if I am doing the right thing; we have just got on with things, just thinking that this is 'littlecricket' and despite the initial desire for a label we have spent the last 10 years not being bothered and just going on the day-to-day needs but am I going to open a can of worms by demanding a label on his records?
In our area you can't get a statement (or special school, obv) without a diagnosis so you've done well so far.
We also had a dilemma about dx for ds1 who we had known to have asd by the time he was 3yo, but with two asd specialist professionals for parents we thought there was no need for the label and that we could "prop him up" adequately. This was fine til he got to 10 and got a teacher who thinks sen doesn't exist didn't understand him and he became quite anxious and challenging. To get him the support he needed, we realised the time had come and went for the dx, just to make sure his needs were met. As a result he got a fantastic transition to high school and gets some support for organisational stuff in school. he doesn't really need it academically. If you think it's the way to get your ds's needs met, and a clearer picture for those working with him about what difficulties he has, then do it and remember that nothing at all changes who your ds is and how much you and everyone else love him. Make sure that it is as positive a process as it can be (but as you're probably aware it can have it's difficult moments too) and as you already say - a means to getting him what he needs. Exactly what we did, and for very similar reasons despite the difference in context.