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?

I think acceptance that your child has a disability of any sort is a hard pill to swallow but once it hits you that you are not in dreamland and it is real after the grief tends to come the survival and protective instinct to give your children the best outcomes possible.

Maybe (and I am only surmising/guessing) because he doesnt have an offical dx yet there is always that hope that its all going to disapear or your imagination is playing tricks with you. Only reason I say this is that although I KNEW my ds was complex I still had that possible silver lining when he had his good days that it was imagination or a magic wand would take it away until it was officially spelt out to me what his issues were. Even then it seemed a dream till I read it in black and white :)

I think zzzzz is correct. I would work out WHY you feel this way about ASD and do something about that, reading up about it does help you understand your child from the inside (the rest comes natural as you know your child best) and therefore understand WHY he/she does things the way they do. Understanding is very important I think so that acceptance and the work to help them progress kicks in. x

I don't know why, I suppose I have some kind of internal model of what being human is about and it pretty much precludes a lack of empathy. I hope it's that I don't really understand what asd is (though I used to work with children with autism). Or that I can shift my understanding of what it is to be human. But I'm failing to do either by myself. I know it's not good enough and that it's my issue but I wondered if anyone else has been here?

My son is very autistic BUT has some empathy, limited to me and not others, but it is there. I think we have our own ideas of what it is to be human BUT autistic children are human, but with a different way of seeing and responding to the world. The usual feelings are there, just maybe expressed differently. It is so hard at the start; I don't think I have fully come to terms with the fact that my son will never be like his peers, but he has many times that he is very happy in his own way, and it gradually becomes, if not enough, manageable.

Can I ask why you are having diagnosis? Has it been recommended by school or GP?
I remember when my ds was 6, I found it exhausting, but many people around us were positive and enjoyed him. I would advise trying to see the dx as part of him but not letting it define him, he still has loads of positive aspects I'm sure. I remember when my ds was finally dx I found it hard to swallow, like it's official, but he or you don't have to declare it unless you don't want to. Depending on he high functioning he is, except as you say highly verbal. From experience I saw my ds mature so much over the years.
I just wanted to offer some support,

DS is human. And to be honest I dont buy all this no empathy stuff (and I mean that in the nicest way :))

See he can empathise when he visually sees tears, he can relate to someone breaking their leg as he has himself and know that it hurt and how awkward it was. When his grandad died he was shocked at his sisters reaction of total upset and looked blank but also said "I think I am sad mum" its just learning how to express feelings iyswim. I think ds will learn how to say the right thing even if he doesnt agree that someones dog died was sad iyswim because I can teach him by saying the feeling is like you have lost x or why or broke something you loved etc. However he can sympathise with his pets if they are hurt etc its just his own emotions and other peoples due to non verbal expression/recognition issues and body language. He loves his cuddly and is devastated if it is gone and has given his sister a replacement if hers was lost so its in there but he just has an automatic robotic response as opposed to showing feelings outward?

Tbh I dont see the badness in empathy issues really as I look at it that at least DS wont worry himself sick over everything and everyone throughout life which would pile up his already anxious enough life as it is. But I intend to teach him the correct "words" for appropriate times.

Maybe he will get a job as a taxman

How do you come to terms?
Do you love your son unconditionally?
If you love him, you will, it may take a while, but you will learn more about him, and autism, and how the two are combined in the unique being that is your son. Because what is the alternative for you and for him?
You are not the only parent who has ever felt like this either, and these boards are full of those who manage and manage and manage and then suddenly come to a dead stop and scream themselves hoarse with the sheer bloody unfairness of it and then keep going.
No empathy? Mine has AS, and over the years he has learned to empathise, learned to consider the needs and feelings of others, but I've had to specifically teach him to recognise signs, interpret them and provide the appropriate response. Now he's managing that by himself in the majority of situations, extending to friends and helping people he doesn't know if he thinks he can.
I taught him to read, I can teach him a lot of things about the world and how to interact with it.
I'm sorry that you are finding it so hard now, but think of knowledge as being a key that will help you unlock other skills and talents in your son. Knowledge made my life a lot easier and less confused.

Have you had counselling?

I have to say though your description of ASD isn't my experience of autism at all. Ds1 is severely autistic but very loving. As a teenager he still seeks me out for a cuddle (whereas NT ten year old ds2 is really far too cool for that sort of thing). although he has severe communication difficulties he has ways of demonstrating concern for others as well. He's just been winding his youngest brother up and spent yesterday evening wanting his middle brother home - all very normal sibling interaction.

Sure he has a lot of difficulties but perhaps not in the way people would imagine for severe autism?

Agreed, my DD is also severely autistic but the most loving child I have ever met, if she could spend her day being cuddled she would.

Have you tried the National Autistic Line helpline? Or do you have a local group or society with a helpline? It might be a starting point, to be allowed to say how you feel (i'm guessing RL people aren't the ones you want to tell how you feel in case you get judged?)
Ds doesn't conform to a picture book version of a child, but I think maybe this scary image is just as skewed as the lovely, empathetic 'normal' child you have in your head? DS was the one crying as a load of NT girls pulled the wings off a daddy long legs outside class one day. It's just different, not non existent for our family.

also, re it being "pointless"...my DD previously would not acknowledge my presence but now, as I said, is supremely affectionate, with a lot of hard work, so it isn't pointless :)

Thank you for being so kind, I know I don't have choice about accepting this but it's just the struggle with how to do that. When I think about DS he's often very affectionate to me and to Nanna and his TA at school, he usually means to be kind though it goes wrong so often. I need to think about what I mean by empathy as he does care about others. The idea that it's in there but the problem is in recognising feelings and communication also rings true.

The reason I'm seeking a dx is that the school don't see him as autistic, they just think he is some kind of devil child. The Ed Psy is confident that it's asd and has recommended a really nice special school which I can see would be good for DS, but he's not allowed in without a dx of autism, there is also more help available for me if he has a dx. He gets DLA and has a statement and a 1-2-1 at school. I owe it to him to get as good an understanding of his problems as I can, as they're fairly serious so that has to include medical evaluation which is leading towards dx.

The label doesn't change the way I feel, I had been hoping that these were delays associated with the extra challenges he faced as a baby/ toddler as he had to have a lot of surgery, but that's clearly not the problem. I know he doesn't have to use the label when/if he doesn't want to but I think better services and opportunities will be open to him if he has it.

Actually... I totally get you OP. I have been through periods of feeling like how you describe in the early years of ds's dx. My son ISN'T demonstrative ... He isnt ''cuddly' and 'loving' .He never has been. He doesn't like physical contact. He can tolerate it sometimes... ( if you really must) But really? It's like hugging a plank of wood.

It was very hard for me to let go of those.... ( looking back) expectations.( that was indeed what it was) I also think it may have been that like you , i prized some of those missing qualities ( theory of mind, empathy) above others. I was still hankering after that 'ghost' of an nt child who never existed .

It takes time. Somewhere along the line that pesky ghost gave up and left me alone. Somewhere along the line I realised that I don't get to say what constitutes a ' proper human being'. It became about really knowing him... Seeing what he had... Not what he was lacking. It's there... You just have to look for it ( and work like the devil to encourage and bring it out)
But when you get it? When I think how far he's come?
Wow

Yes, mine was the devil child in school until his dx, and getting the label opened up a completely different mindset in many of the teachers. He was able to access a lot of tailored support and have reasonable accommodations made to meet his needs. He stayed in MS. Mine had no LDs, I felt the primary school would have coped better if he had. They just weren't up for coping with something they didn't recognise or understand.

A lot of reluctance to cuddle etc can be due to sensory difficulties rather than anything lacking inside. Ds1 is VERY sensory seeking which is partly why he's always hanging off our necks and seeking us out to crush/be crushed. He can find soft touch difficult though so might draw his arm away if I stroke it - this isn't due to feelings/not wanting me near him - just sensory issues. 2 minutes later he'll be wrapping himself around me again.

Yes Jimjams... It's painful for him... I get that... I just had to get OVER it

Just as an aside, I think stuff like this is why I want to dismember people who think that the parent of a child with SN is a special person, that they have depths of compassion and patience that a parent of an child with SN doesn't have.
We really aren't. We are struggling to do the best we can and there is no Pixie Dust or magic well to replenish our own resources. There's just each other.
I'm glad you posted here OP, let's you know that you aren't alone and that no one is going to think any less of you for finding this very tough going. We all do.

If you have had a litany of negative reports about his behaviour from school, it's not surprising you feel down about it all and about his behaviour. I agree with the other posters about learning more, both about different forms of empathy (cognitive and emotional empathy), and how empathy can be shown differently by those on the spectrum, and about working out if there are sensory etc triggers for behaviour, if you can see the anxiety or sensory overwhelm behind behaviours that might help you feel more sympathy.

Oh I know you know troutpout - my post was more for OP - in a what you see isn't necessarily what you get with autism iyswim

ds1 has recently got a talker. Someone said to me the other day that it's easy to lookat ds1 and think there isn't much going on in there. Now he has a way to communicate that's easy to understand. Iyswim. Although his non talker way of acting is as bonkers as ever!

I don't think you mean empathy. I think you mean emotional intelligence.

And it IS an important skill in our current cultural climate, and without it some things can be a struggle.

ASD is very hard to deal with as a parent because you assume the cause and motivation behind behaviour is the same as it would be for an NT child and it very rarely is. That makes handling and 'getting' your child very difficult, and unfortunately even more so for teachers, carers and the outside world that don't have your motivation to do so.

The more you learn about ASD, and the more you learn about your child in this context, the more you will 'get' that many (depending on personality of course) are actually very sensitive and working hard to figure out the social side of things.

Amber once wrote a guide for her church that she shared on here and it has probably been one of the most enlightening things I have read wrt to understanding my ds. Basically, it was to imagine that you had to attend a church of a religion that you had no understanding of. When you enter, the room is set out in an unfamiliar way. You are unsure of where to sit so look around for clues anxiously and then choose somewhere, which, turns out, is reserved for someone else for some strange reason that you cannot figure out but everyone else seems to know, which gets you a few tuts and a few strange looks. The congretation all stand and sit at various times without any perceivable triggers. You 'thought' that you'd figured that you stand for songs, but obviously got it wrong because the last song, where you stood up, everyone else remained seated etc etc etc. And that is your life, and you are trying very very hard. As and when you get things wrong, people can sometimes be very hostile, or at the very least, just prefer you to not be there.

This is going to be your son's life, and he needs your help to reduce the hostile incidences and reduce the number of people that would prefer him to not exist. It isn't his fault he was born with this struggle.

Hi OP. I get what you're saying. When ds was many years off being conceived, I remember thinking clearly that "any SN except autism" would be ok with me, and that asd would be the one thing I wouldn't cope with, even including the whole SCBU-severe multiple impairment scenario. In pregnancy, I declined Down Syndrome screening on this basis.

When ds was born all blue and still, I rapidly backtracked and assured God that if ds would just please breathe RIGHT NOW, anything and everything else which followed was was just fine with me. And so, he breathed. I spent the next several years ignoring all his autistic traits, finally realising that I was terrified of what I ignorantly thought asd was, not of my ds's actual autism .

(not that I don't get fed up and despairing of the impact of the asd, and the impairments and upset which result.... But he's mine and gorgeous. And anyway, i now firmly believe that being normal, coping and feeling smugly content with life are over-rated and that NT families are just odd)