"I see all the similarities between he and many of your children who are ASD but when I read the criteria for ASD on official sources he doesnt seem to fit so well."
Which areas don't you think fit? Communication impairments, social interaction impairments or routine/ obsessions?
"But I know it. I just do. There is something wrong with him. And I would say it was severe rather than mild, even though he often seems perfectly "normal" and lovely and fine."
And nobody's dismissing that something is wrong, not even the NHS. They're just taking their time to find out what is wrong.
"It is just so very important to me that I know what is wrong. He is so violent now, he is throwing his bowls at me, hitting, shouting in a nasty voice, anything. "
But knowing what is wrong via a private dx or otherwise won't stop him doing those things.
"I am flinching around him. I am restraining him and doing all of the things recommended here. But today he was doing it again and again and I was restraining again and again and then I let go again at the right time and he turned and punched me in the face."
I'm going to be really blunt - you didn't let go at the right time then, cos he wasn't calm if he then turned and hit you. You often talk about how close the two of you are and how you don't like doing things that upset him - perhaps this is affecting the restraining. You feel bad about doing it, so let him go before he's actually calm. I have to restrain J a lot and a wrap in a duvet with his head out of the top works in cooler weather, but he has to be held in front of me otherwise, and it can last for 40 mins, until he's calm. He will cry and scream and spit and try to headbutt and bite, but he and I both know that he needs holding till he calms. J has massive sensory issues and needs that holding to be able to reach calmness. Sometimes you're going to have to do the things he doesn't want you to do, like leaving him in time out or restraining him, because he needs it even if he doesn't like it. And that is hard.
"And truly for the first time I burst into tears and ran out of the room. Then of course he was crying and saying he needed me and was sorry and loved me. And I just feel like we are as a family drowning in sorrow. I am struggling. It seems to me so many of you are so competent, you have children with ASD but you arent seeming to question how life will ever carry on. And for me, I am. He screams from waking to bed, he is always falling, hurting himself, screaming, hitting or throwing. And when he isnt, great. But I am so shattered I'm finding it hard to be happy."
it is rubbish. But most of us have been there and do understand. I constantly question the future and how long J will be able to even live with me if he carries on being so violent as he gets older. But a lot of people have said to me recently that I need to try to live in the now more or I'll go mad, and it is true, and true for you too. You can't predict what's ahead. You can only live in the here and now and do what's best at the time. But do what will have the most effect; the OT idea is a great idea - if you spend your money on anything, an initial assessment by an OT experienced with sensory issues would be far more use, IMO.
"So that's it. I know you are right. I know we can spend our money on other things. But I just would kill for someone to tell me what is wrong with my son. I am afraid of convincing myself it is ASD and being wrong. I want someone I can trust to be an expert to tell me."
Treat the symptoms. You can't 'treat' autism anyway; there's no cure. I know there's ABA and stuff, but every intervention with ASD or any other disability involving challenging behaviour works on the same kind of basis: you look at the problem behaviour, work out why it's happening and then try to deal with it by removing the cause, diverting to a more appropriate response and/ or using praise and consequences to encourage positive behaviour. You don't need a dx right now to do any of that with your ds. Even if it's not autism, the above still applies. Every child with autism is different anyway - you're not missing the 'ASD path' without a dx. You'd still have to do all that with a dx anyway; the lack of dx is not a barrier to improving how things are for you!
You're just making yourself more stressed by focusing on that. Focus on him. Follow the NHS route through, and then there'll hopefully be more support. The NHS psych has said he'll see you again a number of times. You're on the way - so let that one go for now and use your limited energy to make the changes that you can make: giving in less, having more time to rest and be away from him, getting some sensory assessments, getting support from other parents in RL - and I will keep my fingers crossed for you that you start feeling a little happier...but I do know how hard it is and things will sometimes seem a lot sunnier than they do now.