Struggling with DD who has autism [Title edited by MNHQ]

I relate to this so much. It’s is very much like a marathon before you even get out the door. On the plus side, work feels like a breeze by comparison and my resilience knows no bounds.

Hello fellow autism parents

I am so glad I found this thread today. I've been googling support groups for parents of autistic teenagers this morning and coming up with nothing.

My 13 year old daughter is autistic and I worry about her ALL THE TIME. It's like there is a part of my heart out there walking around. I feel like I feel her every pain and anxiety. Life is just SO hard for her. She is in mainstream school and doing ok, but every day is a struggle, every friendship is a struggle. I just want to make everything ok for her and take away the emotional pain, but I can't.

I feel a bit less alone now, knowing I'm not the only one.

Joining, with sadness. 11 year old DS, autism, ADHD, motor difficulties & low muscle tone.

In MS senior school & loving it. But in assessments so far not doing well (30-40% on average).

Is very cheeky & charming & universally loved & lovable. But I just wish there was one thing in the world he didn't struggle with, wasn't the worst at 😥 Breaks my heart, especially when his 2 brothers are best at everything they try 💔

Why are there two asshats on here complaining about this thread? It's a vent! Fuck autism too, my DS15 is mentally about 10 or 12 and he'll never be able to live a life without significant help. I am ASD too and we have quite a shitty time. DH is NT and gets fed up with refereeing.

YY to a WhatsApp group. Do we need to PM the OP?

Sorry but if you are not the parent of an autistic child, you have no business hijacking the thread. If you are and you've never felt overwhelmed or depressed by it, good for you.

This too is in the thread, the acknowledgement that escalating it leads to everyone's emotions spiralling. That a better coping strategy would be to ask yourself if it matters, imagine you are being filmed etc to help maintain self control in that moment... etc etc nobody is condoning shouting at a nd child... but everyone is understanding and suggesting constructive alternatives. Meanwhile nobody is berating op because its quite clearly unnecessary she's berated herself and clearly does not need it spelling out, her posts are full of remorse she got to that and full of love too

My brother ( 53 years old) is about to be diagnosed with ASD. I wish he had been 40 years ago and I wish my mother had had access to this thread to vent. Now she’s no longer with us and I’m next of kin and am picking up the pieces.

I have to agree with this. I see so much on other online platforms like Twitter, Carers and parents are never allowed to talk about what a shit time they’re having. I matter too.

Am I supposed to love being kicked, bitten, hit and pinched?

I work very peripherally with adults being assessed for ADHD and ASD. I meet brilliant, talented, funny people daily. But too many of their stories are hard to listen to and it is heartbreaking to understand that they and their families have struggled for many years with little or no support and intervention.

A long time ago, I worked with adults who had life changing injuries.
At induction we were told that 80% of relationships would break down, despite what promises were made immediately after the accident or event. This thread reminds me of that. No parent, pushed to their limit should feel guilt for admitting their struggles.

for all of you who have had a tough weekend.

Sympathy OP, 7YO DD is currently in the process of being diagnosed and it is SO HARD. We have had the absolute worst couple of weeks with her we have ever had and I am continuously worried she will be thrown out of the mainstream primary she loves due to her outbursts.

I wouldn't change my baby for the world, but bloody hell did I mention it is SO HARD?!

It's a relief on this thread to see how many parents of autistic children feel the same way I often do. I joined FB groups but on many you are not allowed to express any frustration or sadness at the challenges that autism brings out children, I would give anything to make my DD's life easier and less confusing for her. She is disabled by her autism. That's not to say there aren't many wonderful things about her or that I wish I could change who she is, I just hate to see her struggling and frustrated.
I would love to join the WhatsApp group too if possible.

When there are parents who openly regret their autistic children's existence simply because they are autistic and institutions (such as MN) that not only support free criticism of autistic people as a class but suppress that class's objections to the hate directed at them, it's no wonder autistic people experience sky-high rates of anxiety and depression.

No one is criticising people with autism. We are simply at the end of our tethers and exhausted through lack of support.

This is where toxic positivity is so harmful.

Been up all night (again) with a child/teenager who's been screaming, hitting and biting you? No, you can't complain. 'They have a superpower you know, and you'll just make those with a milder form of autism feel bad. Look at the positives!!'

Positive attitudes are all very well, but when they mean that people cannot express their feelings and have to bottle up their despair, then you end up with huge mental health problems and suicides among carers.

When my DH had terminal cancer, I got to the point where I wanted to punch people who told me to 'stay positive' (for the record, DH and I did manage to in the whole, for the sake of our kids).

But the icing on the cake was when I went into work (I was on sick leave) to tell my manager that all treatment had now been withdrawn, and my DH probably had a week or so left.
Her response... "don't be so negative! Miracles happen you know! Stay positive!" I just gaped at her like an idiot.

Sometimes life sucks. And you need to listen without judgement when someone feels the need to let out the huge stress that they're under.

Stop being ridiculous. There are way more causes for your depression and anxiety than this forum and the parents using this thread to speak.

My ds will say he hasn't found his superpower because it isn't amazing for everyone.

He is tired can never sleep, wants to fit in feels different. Gets i trouble trying to entertain his peers for approval.

He struggles with simple tasks. Then gets frustrated.

We both cab be thoroughly exhausted by it all.. that is ok..to feel that way.. sometimes we need to regroup , sometimes it all.stops because one or both of us have nothing left to give. His comes out in aggression but i should just love autism because its part of him.

I want my ds to have a happy and easy life Autism does get in the way of that.

Of course I will be your mum! You poor thing, you’re really in the wars aren’t you? Grief is probably informing your own responses to DD right now and again, you need to take that time out and make sure that you’re being kind to yourself and giving yourself some love. Should your WhatsApp group get off the ground, I should like to join ❤️

Exactly!

I quite clearly stated that I too have a child with ASD.... As did others.

I would never ever speak about her and how her brain works, like this. Some of the comments on this thread brought tears to my eyes

Maybe you could start a thread for people like yourself who object to this one. You could call it something like - don’t judge another mother till you’ve walked a 100 yards in her shoes. Or how about - thankful that I probably don’t know half of it.

Im sure you get the gist.

@AllOfThemWitches My DD is 7, diagnosed a month before she turned 5 and to be honest, after adjusting my life and my attitude to how she works, we've reduced the meltdowns right down to practically non-existent now. The only thing that really sets her off is hand dryers in public toilets but we've developed a coping strategy for that too. So gradually, she is beginning to get used to them. At home, she knows what's acceptable & what isn't, how far she can push the boundaries and what winds me up. So meltdowns & bad behaviour are relatively thin on the ground now and if they do occur, it's usually short lived.

I occasionally lose my patience out of frustration yes, but I take a deep breath, then breathe out whilst counting down from 5 in my head and deal with that issue. If I can't I walk away. Then move on. It won’t work for all others I'm sure, but that's what works for us. She wouldn't dare bite me or anyone else. She wouldn't dream of hurting anyone in fact but even so, she wouldn't dare - not because she's scared, but because she knows the boundaries. My limits.

Obviously every person with ASD is affected to a differing degree. I don't doubt for a second that some have it ten times worse & some have it much easier.

@MrsThimbles THAT is your response? After I've very plainly & clearly said that I DO have a child with Autism?! You even quoted my post! 🤣

What has offended you, exactly? Personally, my autistic child's brain works in such a way that it makes my life extremely difficult, in my darkest moments I've thought it would be better if neither of us were here. If you can't understand that, lucky you.