Published on 12, July, 2020
Do any parents find it difficult to know the best way to support their child after a late in life diagnosis? Our son has recently been diagnosed with Aspergers and OCD aged 22. He is struggling to come to terms with his diagnosis and is frustrated with the rest of the family because he thinks we should be doing more to support him by reading books on his disorder or doing more research so we have a better understanding of how it affects him. I have been on various websites and have previously completed an online course in Understanding Autism but I don't know what it is he is expecting from us. He hasn't changed in our eyes since his diagnosis therefore I don't know what we should be doing differently?
Thank you
Yes, I think reining in the need to fix things and just listening might be most helpful to him. Plus, if you have additional thoughts that he might not currently need or might only be helpful to your need to understand, you could maybe write these down or even draw out a kind of formulation. I did this for quite a while when my son was newly diagnosed, just so's I could gauge the lie of the land and build myself a kind of working map of the issues. I just did this privately, for myself, but I found it also put me in a better position for the next conversations because the same themes kept cropping up and, towards the end of each conversation, when he seemed to have talked himself into problem-solving mode, I could then chip in without conveying that sense of imposing anything. I didn't actually do very much of that, but when I did it was more useful because I had a better idea of how it might fit with his changing awareness of himself.
It does sound as though your son might now be looking at things through a different lens, which takes time, and, if he simply needs to make sense of things, you might find yourself remaining silent for much of the time and just giving him space to process what he's going through.
Thanks that does help. He does talk things through but tends to just want me to listen and understand whereas I feel the need to solve his problems. He has been analysing things that happened when he was growing up and trying to make sense of them now. He has a book which he said really explains things so I will definitely have a read. Social skills and empathy are difficult areas for him. Like you said it is a very individual situation and therefore we need to find something that works for him.
I'm also struggling with this (amongst other issues) My approach has been to allow my son to take the lead and show me what he finds most useful or supportive. It's so very individual anyway so my thoughts are that any support needs to be tailored with the person in mind and preferably led by that person if at all possible.
Will he talk it through with you? Did he receive a diagnostic report and, if so, is that something he'd be willing to share with you (my son's came with a list of recommended reading so that gave us a starting point)? Which resources does he find most helpful, what might he feel comfortable discussing and which books would he recommend? Or does he perhaps just need a good listener for now?
Honestly, I still find it difficult to know but I would take my cue from them. And yes, he's the same person but perhaps he's been masking or not felt he could be fully himself (esp. not knowing he was autistic). So this new knowledge might have altered things for him quite a bit, especially if, as you say, he's struggling to come to terms with the diagnosis. To me this invites a conversation drilling down into which aspects of the diagnosis he finds so difficult. Or maybe it's being diagnosed itself (it can be quite a pathologising process, I think) that is problematic.
He might also be becoming more aware of the times he might have needed support in the past and, due to not being identified as autistic, didn't receive it, so I'd be on the look-out for this issue too. It's actually been quite central in our relationship because, of course, our family failed to identify any neurodivergence too - just like nursery teachers, school teachers, GPs and other medics - and so there's been a need to weigh in with extra support now.