I am the mother of a son with aspergers diagnosed for a year. He is 32yrs .

He finds it very hard to talk and interact with other people and has no social life. He also blames me for him not getting diagnosed earlier. He believes it would have been easier to accept and he believes he may have had a better social circle.

Parents
  • I am in a similar position.  Except not only did I fail to identify my son as autistic, I did the same with his brother and also with myself!  There are undoubtedly many, many difficulties we've had to face over the years as a result of this and I'm sure that many late-diagnosed people really struggle. And this can give rise to lots of difficult emotions, including anger (if not rage), regret, a sense of loss and bitterness too.  Unfortunately these might need to be vented and parents can seem (and sometimes be) negligent and, to some extent, blameworthy over past events. 

    That said, when I delve into the stats, the likelihood of being identified during the 80s and 90s was actually a lot lower than it now is.  When looking back I see that nursery staff, teachers and GPs also failed to identify us.  Plus the general/cultural perception of autism was very different too, for the main part.  Certainly it never crossed my mind that my sons could be autistic and I thought that what they experienced related to noticeable family traits - sensitivity, anxiety, a flair for language, perceptiveness etc (qualities that can have a good and bad side).  And I tried to counter these by providing opportunities to build up a social life whilst also encouraging the strengths that are also inherent.  It wasn't enough but I think I tried.  It's just that my own level of awareness and knowledge wasn't that good and, in many ways, the times were against us.  I think a lot of late-diagnosed autistics are finding this. 

    So...  We are now in the position of listening, supporting and offering whatever help our sons might choose.  Much of what I listen to is very hard to hear but, since I missed it all in the past, I now try to acknowledge the issues, our own role in what's happened and our current keenness to offer every bit of support we can.   It still might not be enough but our sons need to hear it and we have a lot of ground to cover.  

    For us, services have been diagnostic only, but I'm wondering whether there are any services local to you which might help - if your son is willing to reach out, that is.  Were the diagnosers able to signpost him to other services or make any other suggestions?  Plus, if your son is autistic, are there other family members who might also be autistic, who have perhaps overcome similar difficulties and have some advice to share?  I'm back to the family traits here.  Plus what does your son want for himself?  What kind of support would he have liked in the past and can any of this be translated into help he can access or build up for himself as an adult?  

    I'm afraid I can't say that we're out of the woods here yet, but, beyond listening and empathising, my own approach is to make notes, look at recurring themes and try to match them with ideas about what we might patch together over time.  Also to share some of my own journey, when appropriate, and make it clear that, even when we let them down, we always still loved them and tried to do the right thing.  Things have happened as they did not due to lack of care but to lack of knowledge (very different things).  The old maxim, "When we know better, we do better" springs to mind on this score, and gives hope for the future.          

Reply
  • I am in a similar position.  Except not only did I fail to identify my son as autistic, I did the same with his brother and also with myself!  There are undoubtedly many, many difficulties we've had to face over the years as a result of this and I'm sure that many late-diagnosed people really struggle. And this can give rise to lots of difficult emotions, including anger (if not rage), regret, a sense of loss and bitterness too.  Unfortunately these might need to be vented and parents can seem (and sometimes be) negligent and, to some extent, blameworthy over past events. 

    That said, when I delve into the stats, the likelihood of being identified during the 80s and 90s was actually a lot lower than it now is.  When looking back I see that nursery staff, teachers and GPs also failed to identify us.  Plus the general/cultural perception of autism was very different too, for the main part.  Certainly it never crossed my mind that my sons could be autistic and I thought that what they experienced related to noticeable family traits - sensitivity, anxiety, a flair for language, perceptiveness etc (qualities that can have a good and bad side).  And I tried to counter these by providing opportunities to build up a social life whilst also encouraging the strengths that are also inherent.  It wasn't enough but I think I tried.  It's just that my own level of awareness and knowledge wasn't that good and, in many ways, the times were against us.  I think a lot of late-diagnosed autistics are finding this. 

    So...  We are now in the position of listening, supporting and offering whatever help our sons might choose.  Much of what I listen to is very hard to hear but, since I missed it all in the past, I now try to acknowledge the issues, our own role in what's happened and our current keenness to offer every bit of support we can.   It still might not be enough but our sons need to hear it and we have a lot of ground to cover.  

    For us, services have been diagnostic only, but I'm wondering whether there are any services local to you which might help - if your son is willing to reach out, that is.  Were the diagnosers able to signpost him to other services or make any other suggestions?  Plus, if your son is autistic, are there other family members who might also be autistic, who have perhaps overcome similar difficulties and have some advice to share?  I'm back to the family traits here.  Plus what does your son want for himself?  What kind of support would he have liked in the past and can any of this be translated into help he can access or build up for himself as an adult?  

    I'm afraid I can't say that we're out of the woods here yet, but, beyond listening and empathising, my own approach is to make notes, look at recurring themes and try to match them with ideas about what we might patch together over time.  Also to share some of my own journey, when appropriate, and make it clear that, even when we let them down, we always still loved them and tried to do the right thing.  Things have happened as they did not due to lack of care but to lack of knowledge (very different things).  The old maxim, "When we know better, we do better" springs to mind on this score, and gives hope for the future.          

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