Unable to come to terms with ASD

[NoCertainlyNot]

I have namechanged for this one.

DS is 6 and I'm starting to finally accept the thing that everyone else can see - that he has an ASD. He's socially so far behind, inclined towards violence, talks endlessly about engineering over and over the same topics in the same patterns (to the point where I want to put in earplugs by 9am most days). It's looking as though he's not far off a dx and I still can't accept it. It was the one thing I thought about before I even got pg with him and felt that I could cope with virtually anything but autism and sure enough he was born with some physical problems that I felt well able to handle - I've researched, found the right treatments, helped and encouraged him with, and he's been doing really well. But there's something that hits my buttons with autism, I know I shouldn't feel this way but it just seems so pointless. It feels as though the thing that matters the most to me about being human (empathising with and undertanding others) is just not there in DS. I feel no inclination to try to move mountains to make things work as well as possible for DS in the face of this as I would if he had any other kind of difficulty, I just feel crushingly disappointed. It's not new, people have been raising serious concerns since he was 2, and I had been hoping that I would suddenly 'get' it and understand and step up to become the kind of parent DS needs. Am I the only parent who's ever felt like this? Any ideas on how do I come to terms?

Is it because ASD kids are viewed as cold, heartless and unfeeling? Am really struggling as to why anyone should see ASD as the worst SN.

It's because of the pop-psychology that exists in our current culture. Men who are crap husbands, unfeeling or down right abusive are excused/labelled as having a bit of ASD/Aspergers.

My ds is loyal, caring and whilst gets things wrong has a very strong sense of fairness in his relationship with his sister. I expect him to be a very good husband if he ever gets the opportunity.

My post was prompted by me having the bad day after several dozen too many repetitions of DS's verbal continuous loop, but people's comments have been really helpful and I think I have a plan for getting my head around this now: I need to do lots of reading on things like theory of mind and empathy and really pin down my own beliefs. I'm tried the NAS helpline, I don't think I can get counselling and it's not really what I need- I need an academic debate on what it is to be human, though tbh I'd take an intelligent conversation with another adult on any topic . I was doing the whole superhero parent thing with DS's physical issues, so it's partly that I'm burned out with that, and I suppose I can see that it is possible to be this mythical creature yet I'm failing to do itt.

Interesting that a member of my family is very unfeeling and whilst he has basic theory of mind and good 'social skills', he has no ability to empathise or sympathise and no sense of what's fair... but he's not autistic but rather has a personality disorder and I think some of my fears may stem from this.

NoC I think it was very brave of you to post what you did here tbh. I don't think you'll have as much trouble sorting this out in your head as you think.

When DS was first dx with ASD, I went to an NAS meeting in search of support and with a very down face told the organiser that we'd just got a dx. She looked at me horrified and snapped 'It's not the worst thing!', which annoyed me because, then, at that time, it really WAS the worst thing.

But it isn't now. In fact, if ds' struggles didn't make my heart bleed at times, I'd say I quite like aspects of it. He's who he is and he's gorgeous. He's still a social being, but just isn't very good at getting it right. However, he can learn rules that get him through most scenarios or how to ask appropriate questions to increase his chances and sometimes slowly develop the true skills too.

ASD is a developmental DELAY/DISORDER, not a halt. And the US has recently suggested that 1 in 54 boys now have ASD, so it is definately a very human thing.

Loads of neurotypical people are incapable of empathy imo - just have a look around MN (SN excepted of course).

Any diagnosis takes a while to come to terms with. And 'autism' is so many different conditions, so everyone you meet is coming to terms with something different. DS1 is severely autistic, so we don't have to come to terms with any sort of fitting in thing. He's never remotely going to fit in, and he isn't ever going to be aware of most social rules. We've had to come to terms with how to ensure he can get as much out of life despite his diagnosis, and tbh until he started doing and enjoying things that I saw value in I found that hard. (Although that's prob my problem rather than his). Now if he has a good, active day engaged in something like moor walking, or surfing or swimming I'm happy and I don't see his autism as a problem. I find days when he's angry and too flitty or uptight to really be able to enjoy anything still pretty difficult - fortunately there aren't so many of them.

But we had to let go of the things we expected to be able to do iyswim. And it's fine now we have things to replace those.

I rejected counselling btw as I thought I was happy with everything - but it ended up being the most useful thing I did (with someone VERY experienced with ASD including severe autism though - with the wrong person it would have been useless).

NoC, I get where you are coming from. My DD is also getting close to dx; at her first multi disciplinary assessment, I asked the pead if she would rule out autism and/or learning difficulties - and of course she said she couldn't do so.
What has helped me come to terms with it is this board. I have learned so much. In the early days, it gave me the impetus not to listen to well-meaning family and friends who told me she would catch up, nothing wrong with her etc.
I do have days where I wish it would all go away and that DD didn't have to go through this. I hope this doesn't come across as flippant, but what helps me then is to think that if DD could have sat on a wee golden cloud just before she was born and had to pick a mum for herself, I doubt she would have picked a loon like me!

You asked if anyone else had felt like this. I felt exactly the same. Right down to being irrationally scared of autism even before I was even pregnant with ds. I remember when I was pg with him and was talking to someone about the 12-week tests for abnormalities, and saying I wasn't worried about things like downs syndrome, but it was autism I wouldn't be able to cope with

Like you, I thought it was the one, single condition that I was most scared of, that I could never cope with, for exactly the reasons you say - after all, being able to communicate is what makes us human isn't it

I feel no inclination to try to move mountains to make things work as well as possible for DS in the face of this as I would if he had any other kind of difficulty

This is the key thing imo.

I think the closest I have come to coming to terms with ds's autism has been through doing something to help him, and to address the impairments he has (we started ABA just before he was dx). I thought that autism meant a child locked in a silent world forever. The day I discovered that you can actually do stuff to help really was an epiphany moment - it meant that 1) ds was actually learning and changing, and 2) it gave me something to work on, something to do, a target to aim for.

If I hadn't have realised it was possible to move mountains, I would still feel that autism was the worst thing in the world. Realising that it is possible to move mountains to help has not only helped ds, but it has made me see that autism isn't actually that bad.

Not saying it's not absolutely devastating to realise your child has it (I was in massive denial for ages), and I still have some real stuff to deal with about bitterness, jealousy, and sadness about nt families). But I have realised it doesn't mean a person with autism is actually a different species to the rest of us.

But autism does not mean a child can't learn the things you mention - it just has to be taught in a different way. Theory of mind won't come naturally to your ds but he can learn it. As Torchlight said, asd is a developmental disorder/delay - it doesn't mean a person with it is not human.

Your feelings are imo perfectly understandable.

I think your feelings are very understandable. Its sort of a more extreme example of a Mum who wanted a daughter to share girl stuff with but ended up with boys and felt disappointed. My DH is adopted and grew up in a family with whom he really had nothing in common. It is hard living day to day with someone who you cannot share stuff thats important to you with, who doesn't 'get' you. I think autism is quite different than many other disabilities that way because its not just a delay, they are not on the same path as you but behind, they are on their own path and see the world so differently. Which is often wonderful and refreshing, but if you don't have a child to share NT stuff with then that is a real loss.

I think the conversation about something boring on a loop thing must be very very hard.

There are things I see 3 year olds doing and I think DS (5) can't do that yet but I am confident he will. But there are also things I know DS may never do because the social urge to do them is just not there. And that does make me sad. Not sad for him, he could not care. But sad for me because i expected to share that stuff with him.

I do think over time and given 1% have asd that we as a society will redefine expectations to include those with social-communication differences. I went to a children's museum just after DS was dx and it had quotes which said things like a child who does not play is not a child, or does not have a soul etc etc and remember just feeling so awful as DS could not play at all then. I guess over time and with more awareness that will have to change. Maybe there will be some awareness that not everyone will speak, or pretend play or want to be social and thats ok. Lets face it none of us were prepared in pregnancy for the idea our child would have little interest in us. I read about Downs etc but none of my pregnancy or toddler development books mentioned autism.