Does anyone else with a child with ASD feel like this?

[TheLadyhasarrived]

DS is 10, diagnosed with ASD last year.

Some days it’s just there in the background and it’s fine.

Other days I hate it and it feels unfair and heartbreaking that he has to deal with it and struggle.

I wish I didn’t have days when I hate it.
I love DS, he’s amazing.
But it is hard, maybe just now because it’s school report and parents night time.

The Christmas concert 😢
DS has come on heaps in that area thanks to a brilliant teacher he had in Y5.
But now he’s in high school, he’s just lost in the system.
I’m so used to him, and don’t see a lot of his peers, that when they are all together you suddenly realise...

You are absolutely not alone!

DS was officially diagnosed with Autism last month at the age of 12 after being referred to CAHMS with bullying related anxiety, depression and suicidal tendencies.

We've since learnt that this is interlinked with his traits, he his hypersensitive to other people's emotions yet can't regulate or process his own.

DD had a birthday party this morning and he had to tag along, when he found this out he got hyped up and stressed to the point where I had to wrestle a knife out of his hand because he was screaming for someone "to please just let me die", an hour later when he had finally snapped back with us he was exhausted and absolutely sobbing because he was scared that he might hurt himself or someone else.

It breaks my heart and terrifies me all at the same time, he shouldn't have to deal with this shit but I hate that 5yo DD has to witness it, often screaming in terror because she thinks he's going to hurt her.

This never goes down well, but I’ll be honest - I would remove DS’s autism in a heartbeat if I could, and if a prenatal test was available I would not only have to test but I would terminate the pregnancy. His life is miserable, lonely, frightening and anxious. Why would I want that for him?

Sorry, that was all very long and "me, me, me". I just had to rant

@immortalmarble, I completely understand where you are coming from.

I love my DS but it's been a constant struggle for him. I worry about his future and how long he will be able to cope with it.

That's not the life I'd want for myself let alone my child.

I wouldn’t get rid of the autism because branluse (I think it was) was spot on that is what makes him him, that’s what makes him the child who can direct you anywhere in the country or tell you who was monarch in 1656.

I would take away the comorbid problems such as the dabilitating anxiety in a heartbeat though. The inability to even leave his bedroom some days is heartbreaking.

There are also plenty of things in the wider world I would change to make life easier for him

a lot of the anxiety and loneliness comes from being repeatedly traumatised from NT expectations and demands

Hi OP, I know exactly how you feel, my DS has recently been diagnosed with ADHD and ASD, it is hard work. He is borderline a recluse as he cannot interact well with other kids. His anger is terrible and constantly threatens to kill himself when things don't go his way. We as parents apparently hate him if we try to discipline him. I have many days where I just want to leave and go somewhere alone to scream out loud. I am burnt out but love the boy to bits and I know he cannot help it. It just gets on top of me. You are not alone

The problem with trying to fit a square peg into a round hole, is not that the hammering is hard work, but that you are destroying the peg

Maybe. But my DS wants that. He desperately wants to be part of the NT world but it is as if there is a pane of glass between him and that.

So he tries to join in ordinary conversations but never quite gets it right and even when people are kind there is a look of alarm or flicker of disconcertion he doesn’t see so knows he got it ‘wrong’ again, and so drink and drugs (over the counter thus far) help so have more of them, and it’s all a raw bloody mess and I can’t help.

No way would I wish this horrible condition on anybody. Much less my own beloved child.

he cant though can he.

I know its difficult for my kids too, as it has always been difficult for me.

I would suggest finding local groups and social things FOR people with autism or SEN. I think this is vital, and if there isnt anything locally, maybe put a plan in to either get to one periodically at times, or consider moving to a better supported area so autism can be taken out of the equation and are more likely to feel accepted, even if it doesnt get as far as making friends in the way that you would wish for. Having aquaintances if not friends who also are like you or accept you, is VITAL, and is one of the problems with mainstream schools, where you just feel more and more different and more and more isolated.
In my area there are various meet ups and clubs locally. I think if ever i move, this will be something i would check for in an area.

I think there is a lot of truth in the saying “I wouldn’t change my child for the world but I would change the world for my child”

Ds is 9 now and it’s only in the last 12 months (during which time we have hit complete Crisis point, climbed out a bit and are now at risk of falling back) that I have realised that in a lot of ways I have been going around things the wrong way. I have been trying to push ds into things because that’s what should be done, that’s what the NT world expects. In short I was trying to change him in order to mould him to “fit”

Now I listen to him, I take my cues from him, I don’t force him to go to places when there is an option, I don’t force him to sit down in the waiting room if pacing keeps him calm. I let him be him and hopefully it helps him to know that at least when he is with me he can be himself.

@Sirzy

DS would be furious if I tried to take him to a meet up for people with autism or SN. He doesn’t accept he has it - on a good day he will agree he has ‘some traits of Aspergers’ - that’s as much he will concede to.

His self esteem is crushed. He knows he gets things ‘wrong’ - says offensive things, tries to join in lighthearted chat about popular culture such as The Apprentice but ends up going into a full blown rant where if you don’t know him he appears furious - red face and vein in the neck bulging and people edging away nervously. He isn’t. He’s trying to join in and be sociable. But can I understand an 18 year old girl being scared half to death? Of course

His self esteem is crushed. He despises himself, he will in all probability either die directly at his own hands or indirectly through drug abuse, misadventure or the slow horrible slide of malnutrition or prolonged dehydration.

And I can’t do a thing about it.

When I say I would take it away, and people reply that I am therefore taking ‘him’ away - yes. Yes, I am. Not because I want a perfect child. The opposite. I don’t love my children because they are perfect or imperfect, clever or syreuggling, beautiful or plain. I love them because they are mine. They are two perfectly ordinary young people who are beautiful to me because they are my lovely children. That’s all.

Take away DS’s autism and leave me with a NT DS. A DS who has a girlfriend or a boyfriend and a job or a university place and understands his place in the world and how it all works. Yes, I would. Every time. Not for me, for him. That DS has a future.

but dont you see that is likely a result of his ingrained internalised ideas of what autism is, which is a result of society itself and what it does to people who are different.

I think its not uncommon for autistic young people to go through this, especially if diagnosed late, because then a lot of damage is done.
There are great autistic role models out there that maybe he could be introduced to gently. Not in real life necessary, but as a concept. Try and promote a realistic idea that having social and communication differences and difficulties is not terminal. There are people out there that will understand, and he needs to know too that the people who he might have been aware of at school with autism, are not necessarily representative of the autistic population.
A gentle promotion of the wide range of autistic people out there that is heartfelt, and not lipservice, or a concession, might be helpful. He really needs to realise that it isnt a death sentence, its just a challenge, and he can lead a fulfilling and happy life, even if he does need some mental health support, and even if it doesnt look exactly how he thinks it should be.

Im really sorry that he is so unhappy at the moment

With all due respect @Branleuse, I am finding your posts patronising at best and passive aggressive at worst.

It is not about anyone "repeatedly traumatising" or "damaging" anything, that would insinuate that DS' suffering is my fault when we do everything we can to help him but sometimes it's not enough.

The world around him isn't as accommodating, no matter how much I wish it was and like immortal my DS absolutely despises that he has a "label" that excuses why he's different from everyone else. This is how he sees himself, we and countless professionals have tried to work with him to see the positive in this but he can't.

He is extremely clever but this he cannot get his head around so it's not all cut and dry.

So I do apologise if I am not doing this right in your eyes but no two people are the same and there's no one size fits all solution so please feel free to dish out gold stars to those deemed worthy whilst making those who aren't feel like absolute shite.

I may be wrong but I don’t think for a second branluse meant that it was parents who where “repeatedly traumatising” their children, and certainly not deliberately so. But it would be naive to not realise that so much of the environment we live in is traumatic for people with autism and even more so to not realise that will have an impact on them both short and long term.

As parents we do what we think is for the best, and yes sometimes we fuck up alonv the way but we are trying but we can’t change so many things in the world which would help them

I was literally just trying to help, and I never meant that you were traumatising him, honestly, but that life and school and society can be traumatic.

He doesn’t think it is a death sentence.

I do, though, to be honest.

You cannot take away anyones autism. Its just impossible.

You can however try and lead an autism friendly life to some extent, and I think you do have to let go of some stuff. Both as a parent of autistic kids, and as an autistic person. Otherwise you just arent gonna manage

All the time. I also have Autism and sometimes i love it, sometimes i hate it. I posted this on my blog recently...

"Sometimes, when life is going smoothly i think that Autism is amazing. I have a great memory, a fab attention to detail and i'm awesome at researching whatever takes my interest.

But then something happens. Something that most people would find mildly annoying is the end of the world. The cafe where i always go for Latte is closed due to staff illness. I cannot just go somewhere else. All i can do is rage at anyone who is listening and then go home and sink into yet another black hole. In those moments ( which are often as when does life ever run smoothly) i hate Autism."

My son has classic non verbal with learning difficulties autism and has no understanding of social expectations but he is still very anxious.
Some of it is external sensory stuff which I cannot remove and some it is due to internal things such as feeling discomfort or the changes associated with puberty which he doesn't understand.

This might not help but I was working with a university student and it was coming up to Valentine's day. I asked whether he and his girlfriend would be doing anything and he said no. I joked about the girlfriend might not be happy about that and he said ' Oh it's OK. We're both autistic so we understand each other.' They seemed very happy together and I think this helped my student a lot in coping with life.

I get it. My DC was diagnosed at birth with a chromosomal condition so I had to battle to get an autism assessment. My local authority is reluctant to assess if the child already has a diagnosis, his old head teacher asked me if I thought getting him assessed would be labelling him, no it’s a diagnosis which has actually opened up a world of help. My DC is a young teen, he’s non verbal, can’t read or write and never will, he’s now in a fantastic special needs school where he is very slowly coming out of his shell.
As he’s getting older I’m finding the differences between him and others his age very painful, I see kids on scooters and bikes out playing in the street, my boy is indoors playing with Happyland. He likes being alone, I can’t play with him. He has recently started lashing out, probably due to hormones/puberty. He has extreme sensory issues, people eating around him (chewing noises) and dogs barking seem to be the worst. The Christmas plays and such don’t bother me because the 8 other kids in his class are the same as him. Nobody leaves the school hall with dry eyes!
It’s heart wrenching parenting a child with autism, I have extreme lows at times. Accessing as much support as possible seems to help, I have also started seeing a councillor to help my mental health as I’ve noticed that I’ve started becoming bitter.
to all.

That's my point, life is a constant trauma for him.

I don't know where my DS ends and Autism begins. Trauma, anxiety and fear are what contributes to his personality and makes him miserable.

It's heartbreaking to hear him sobbing for us to "let" him kill himself because he wants it to stop.

If I had known this would be his life, I couldn't have allowed it.

That's not to say that I would harm him or see anything happen of course, he is mine and I love him because of this but there is very little enjoyment in parenting him. It's a constant battle for him and us as a family.

I can assure you whilst i know that's an uncomfortable statement to read that thinking it and having to pretending that I'm not because it's not acceptable makes me feel far, far worse.