Published on 12, July, 2020
I am worried about my son's ongoing ESA claim as, for around 2 years now, he has refused to engage with services which means, of course, that there are no appointments, treatments or medications we can refer to, nor any clinic or professional opinion we can include. In short, no corroborative evidence. It is only a matter of time before the dreaded ESA questionnaire lands, in order to update the information that was very well supported for the original claim (crisis team, early intervention in psychosis team, GP and CPN).
Our son (23) is extremely withdrawn, mucky, possibly depressed and very hard to engage in any conversation. In spite of having been discharged from the early intervention team because they diagnosed him with Asperger's and said they could find no evidence of mental illness, our son insists that he doesn't have autism and wants to be left to sort out his own problems in his own way. This he does by avoiding everyone and he seems to find it almost painful to talk to us. Or indeed anyone. He has no friends or interests outside the home and, although we try to be supportive in a person-centred way, it's hard to know what we can do to help.
How might we encourage engagement? And how on earth can we protect his interests financially?
I'm still feeling stumped. Although I now have my own diagnosis (which to my mind sheds some light on what might be going on in the rest of my family), services treat me very much as an individual and can offer no advice or guidance on how to help my son.
Yesterday the Adult Autism Service countered all of my questions about family by emphasising the need to focus on myself as an individual when it comes to accessing services. They then proceeded to talk about my own needs and what I could expect from the referral to a local autism charity.
It seems to me that my most pressing need is for anything which might help me to help my son. This is certainly what is causing me most stress in life. I feel as though I'm up against a brick wall. On the one hand their website indicates the largely genetic nature of autism, yet on the other there is little which takes a family approach and it seems to be actively avoided.
Many thanks. Good to know. I think it would be all very much down to what I could do. There is also the likelihood that our son will refuse to attend at all. He basically wants nothing to do with the external world, very little to do with us as parents and to remain in his own room, using the computer as a distraction from all of his issues. Our GP is aware of this but I 'm not sure what she would be prepared to do unless my son himself specifically asked. Last time around we had a letter from his CPN (with whom he obviously refused to engage) but now nobody outside the family actually sees our son and I'm guessing that, without seeing him the might very well feel it's be unprofessional to write a supporting letter.
I don't know if this is useful to you but I learned that when your appointment letter arrives a letter from a friendly GP will delay your interview by three weeks or so. So that gives you a bit more time to get organized. It only works once though. You need to phone up to find out where the doctors letter should be sent. It will be different from the address on your appointment letter. Also your son is probably entitled to a free taxi ride (arranged by the health assessment office) to and from the interview. They prefer people not to know about that.
Best wishes.