People go on and on about help... invasion-
yes I've felt that too, when a charity put someone in and we had to spend days trying to keep things from being broken or whatever because we worried someone visiting for one hour a fortnight might judge us. And the effort of entertaining them when DS1 would wander off and lock his door.
And the youth clubs etc that become available but are an hour's drive away and then you have to sit in your car for another hour on a school night with all of them if DH is working, but if they don't like it and you call it a day people say you are denying your child an opportunity. Who in their right mind would choose that option for an NT child?
That's why the system needs to understand far more and plan better, so that services are targeted. We asked for one night's respite a year, so we could just do something together. My Mum takes them for a few hours when we can afford the petrol to get there, but that's rarer and rarer. We did have a hobby of carnival for social purposes but the boys struggled and in the end we had to set up as a family club which is really nice but does reinforce that isolation even more, we had to leave all of our friends behind. That 2 hours a fortnight to chat and just be was like manna for the soul.
But all that sounds negative; in truth, I don't think we have a bad life. In the moment we have a lot of love and fun. What really gets to us is the worries for the future, the battles- we managed to get ds3 the school place he needed for comp only on the say of one person, the LEA were willing to send him to DS1's school knowing he would be in danger and that school desperately did not want the risk. The worries about whether DH's business venture can sustain the rules of universal credit. What we do when Ds1 turns 14 and still needs lots of help but slips through the PIP criteria which dropped aggression and supervision as criteria.
And that's all man made crap isn't it? Systems that see families as the enemy and resource suckers. Budget-huggers we call them. people who can't see the effects of their bad decisions on other budgets (MH, for example).