Well, around 3 years ago our adult son was discharged from the early intervention team on the basis that there was no evidence of mental illness, rather of a condition, namely Asperger's. At that point he refused to have anything more to do with services, so an autism assessment to get a formal diagnosis was out of the question. This meant that the only way i could get an idea of what has been going on in our family was to have an assessment myself, leading to my own recent diagnosis.
Now diagnosed I have access to the support that was previsouly denied because we had no formal diagnosis, even though our son's consultant actually signposted us to the organisation i'm now with. When I'm explaining our situation in my own 1:1 support, the support worker has simply suggested that this is "more than just autism." Fair enough, my own conceptualisation of the situation is that undiagnosed autism with a total lack of support led, almost inevitably to a host of other issues, some of which attracted various MH diagnoses.
This leave me with a huge problem though. Having been discharged from MH services and now feeling much more confident that a lot of our family issues relate to autism, I don't know where to turn as a parent. This is actually the part of my life that is proving the most challenging for me. So when a worker says, that this is "more than just autism" I feel as though the issues are being either pushed back onto me (and i'm really not coping very well at all, especially after all of this time and seeing no changes) or that they are being redirected, probably towards the very MH services that discharged us.
This may well all be academic because our son won't engage with any services at all and then I bump into the argument that "He's an adult and needs to reach a point where he wants to reach out for help." But we are struggling to cope and need support so where does this leave us?
Sounds about right for NT's, everything is on you as an adult yet you have no idea what, when, where, why or how. Thus, could you broach the subject with him and/or his GP?
If you have a diagnosis then you have definitely passed on some nature/genes to your children, with other possible from the other parent.
Spotting something that he does that you do could open up some discussion between you as well.
Now I am on my journey, chatting to family about it, I get feedback that some of my ASD/ASC traits are seen in my parents, uncles, aunts and cousins. Of course they are either pensioners and/or have died (undignosed).
Yes, I think we have fallen between the paving stones. Yet again. I have a diagnosis, as does my older son and I think we're gaining in understanding as to what"s really been happening in our family.
As with yourself, this extends to aunts, uncles, cousins and grandparents so it seems astounding in many ways that we didn't have a name to put to it until quite recently. I suspect my husband is autistic too - that might be why we're together and have a high level of mutual understanding.
I've spoken to our GP and there's now a note on his file (which might be handy should the DWP contact them). But he won't speak to the GP himself, nor will he speak to us very much. Safe subjects like meals are OK, but he completely rejects the merest thought of autism, is completely reclusive and practically runs away when it comes to serious matters.
If I were to persist I'd be talking to the door. I very often am anyway and this is a major cause for concern on which I could also do with some professional support. There haven't been any shared activities for some considerable time either ( so no chance of any conversation spinning out of these). He sleeps when we're awake, avoids us as far as possible, and lives in his room with no other contacts.
I feel desperate.
Think about this a little differently, see if he would come along to help/support you in one of those sessions. It could broach something you both exhibit (fixations, swimming, etc).
It's certainly a though but it is an indication of how severe things are that this actually feels extremely unlikely. He's recently stopped even asking for a lift to the shop and seems to avoid me altogether. He won't even come into the living room with me, indeed runs out of the kitchen from one door if I come in via the other. And I'm the person who is closest to him!
Broaching things is really problematic. I have, at best, a few words I can get in before he makes his exit, do I really gave to think about them to make them count.
I think I need coaching in how to parent a total recluse. :(
I'll have some questions lined up for my next 1:1 though.
Whom do you have 1:1 with if I may ask?
Psychotherapy or something else?
I have the same question, how do you parent at this age? It's time for them to be independent,but they are not really, they don't have the necessary maturity, and I don't have the knowledge, and experience to know what to do. In a few years I will have the wisdom of the hindsite, but the help is needed now.
It's support work with a local autism charity commissioned by the NHS.
I've had psychotherapy in the run up to my own diagnosis but so far nothing has helped because it is the pressures associated with my caring role that are most affecting me.
Yes, it feels dreadful to me. The pressure and worry would be removed if they could successfully fly the nest. But is that a realistic or even a kind expectation?
I need a coach.
It also occurs to me that there MUST be parents out there who have already been through this and do have the benefit of hindsight. I'm just not finding their voices in any of the online groups and forums to which I belong.