Need for support and advice

Hi NAS23936,

The whole ‘value of a diagnosis’ is a very complex subject. Hence my long winded reply- sorry!

Some people seem to really appreciate and benefit from receiving a diagnosis as it helps them and those around them to understand their difficulties and their needs better. And from this viewpoint, I can really understand how you may feel quite desperate to find a diagnosis that might finally explain your son’s behaviours and difficulties and which then, in turn, may also enable you and others to better help him and for him to better understand and help himself moving forward.

However equally, in some ways, a diagnosis really is only a word or two on a piece of paper too. Therefore, in my experience, I gently offer to you that a diagnosis never really makes specific or individual problems go away. It’s only real power is that it may make problems more understandable and therefore may offer clues as to how best to accept or tackle them. In this respect, do you need an ‘official’ diagnosis to help you or your son understand better where he is coming from? Or could it be enough if you were to simply offer him your perception of his difficulties, (and help him find possible solutions,) using what you have now learnt about PDA as your guide?

It’s excruciatingly painful for parents to watch their children suffer, particularly if, like you, they feel a diagnosis could help them. But it may be possible that a diagnosis therefore holds more value and importance to you than it does to him.

If your son has struggled all his young life, and has already received various diagnosis, from various professionals, which have all failed to help him, it would be little wonder if he does not value a diagnosis nor wish to relive the difficult experience of gaining yet another (new) one. Your son may therefore understandably be failing to see how a name, be it ASD or PDA, could actually help him to manage and overcome his difficulties on a daily basis.

Respecting the fact that your son doesn’t want a diagnosis, while also expecting your feelings and needs (about the value of diagnosis) to receive equal respect and consideration from him in return could be the best way to move forward. As neither you nor your son’s viewpoints are ‘right’ or ‘wrong;’ I can’t help but feel that the best outcome here might not necessarily be to make your son agree with you and accept another diagnosis, but for you both to fully appreciate and understand the different places where one another is coming from as individuals and why.

You say your son is great at understanding social (interrelational) issues- you could therefore explain to him and ‘own’ your own desire for him to have a diagnosis, a name, and explain to him why you personally think a diagnosis would help him now specifically, and why thinking in these (‘medical, diagnostic') terms helps YOU (and possibly others too) better understand where he is coming from; you could also explain how you think the ASD diagnosis was wrong, admit how it has therefore not helped him, and why you now suspect a diagnosis of PDA may be more appropriate and crucially, how a diagnosis of PDA may be able to help him. But while also fully acknowledging (and respecting) that he doesn’t and may never feel the same way as you do about it all. And that having differing opinions about the cause and effect of his difficulties is okay too.

When all is said and done, unless you believe your son is not capable of making an informed decision about his own life (which would be a different situation altogether) he must surely have the final say on what works best for him?

In my tentative opinion, a diagnosis of any kind needs to have some real life value for it to be worthwhile. And it can sometimes be more productive to treat people as individuals, to work with them on managing their specific daily difficulties positively, from their viewpoint, than perhaps to push an ‘official’ diagnosis on someone, however well-meaning that intention may be.

But I think you have a right for your opinion (and for your suspicions of PDA) to be given a fair hearing from him too. Just as much as he has a right to be gently informed if you have recently learnt new information (about PDA) which you think may genuinely help him.

Best of luck.

Hi AngelDust

Just wanted to say how much I appreciate you taking the time to give me such a considered and wise response.  I hadn't thought of  many of your points but they have really helped me.  I feel so much clearer now about the way forward, particularly in terms of seeking another diagnosis.  You are so wise to suggest that this may not be the best way for my son and that I should respect his wishes.  I am going to focus on his needs and how we can best support them instead.  Thank you from the bottom of my heart. 

I am also going challenge that you need to start looking after you and your husband first and start recognising that you can't help your son unless you are well yourselves.

He's an adult and like it or loathe it he has autonomy to make choices even if they are crap decisions.

I know this is not easy. We are watching my step daughter age 16 make some really bad choices and she's got LOTS of PDA features. We keep laying out the options, but we also now protect ourselves by making time and space that belongs to us to nurture our relationship.

Oddly enough when we do she's far more responsive to our efforts... probably because we are more resilient.

Thank you.  That is good advice.  It's hard to get perspective when you're constantly fire fighting though.  Will try to take time for ourselves which is something we hardly ever do.  Thank you.

Thank you.  That is good advice.  It's hard to get perspective when you're constantly fire fighting though.  Will try to take time for ourselves which is something we hardly ever do.  Thank you.