To be done with autism

[stargirl1701]

I'm done with it.

DD1 is autistic. She is nearly 11, diagnosed at 5. We have made numerous adjustments at home. School have made numerous adjustments. All to no avail.

She swore and kicked her little sister yesterday. Immediate consequence no screens for 24 hours and sent to her room. Of course, meltdown. 2 HOURS later after punching and kicking me she complies.

I'm done.

The needs of the many are now coming first. I'm on my sixth anti-depressant, DD2 is terrified in her own home, DH spends his life walking the dog trying to remain calm in the face is extreme provocation.

I'm done. No more. The 3 of us are coming first for the first time in more than a decade. I'm done.

No more empathy. No more trying to understand. Done.

No matter what we do, she has violent meltdowns. She thinks of no-one but herself. Modelling doesn't work. Talking incidents through doesn't work. She won't use any strategy she has been taught to avoid a meltdown.

I'm done. Time to live our lives.

You won't want this right now OP, but sending you a hug anyway. She will sleep tonight, and you will get a rest of some sort. I'm sure you've tried this but are you giving her Omega 3 supplements? I'm insisting my DS starts retaking them after a few what, the what meltdowns recently. It's a small difference but it does seem to help.

Good ABA isn’t abusive, OP. I’ve offered to discuss with you and that offer stands, and you’re under tremendous stress, so but please don’t insult those of us who have pursued the only evidence based course and seen it help our kids.

I really wish you all the best, you, your family and your daughter. I am autistic (diagnosed). My dd is adhd (diagnosed) and my dgd is neurodivergent, too. My entire family is a nest of neurodivergents. I wish I had a solution. We came to 'enjoy the things you can, let the other things go', pretty much.

OP you poor sod. Ignore 90% of the posts on this thread and do what you need to do.

I don’t understand this. How can an autistic person be separated from their autism? It’s part of who they are.

I've not had her hearing tested since the early screening test. Thank you. Xx

Definitely worth looking at, my DD showed no obvious signs that she couldn’t hear - her communication difficulties were put down to her complex needs but actually she couldn’t hear half of what was being said to her and was trying to fill in the gaps (and getting it wrong). Her reading age has improved hugely, she’s has specialist SALT support and is doing much better, relationships are better because she’s less frustrated and can hear what’s happening around her.

Did I say love was enough or anything about taming her? No. I did not.

You know what won’t help? Venom.

Oh ok that's interesting thanks for sharing. I had a very violent autistic older sibling (who my parents had no idea how to support - it was many decades ago) so I do understand to some degree. I get very triggered by violence from my children, I have noticed my husband doesn't have the same kind of visceral reaction that I do and is able to handle it a bit better than me and respond a bit more calmly. I mean I really feel properly threatened even though they are smaller and weaker than me, I guess it is a kind of PTSD, and it's scary because I worry about lashing back just out of the instinct of self-preservation. I have done a lot of therapy, EMDR etc. but the thing that seems to have helped me stay a bit more in control of my reactions is probably doing martial arts and boxing oddly enough - I think a lot of tension from childhood abuse is held in the body and when you get to be safely aggressive and physically release it, it can be quite cathartic. A bit leftfield but just thought I'd mention it. I know this sounds like I am deflecting the problem on to you and away from your daughter but defusing the (perfectly understandable!) tension and fear around violence might possibly help? I know you mentioned you were already doing Tae Kwon Do. Anyway please ignore if that sounds insulting.

I have 4 children, we were all suffering - ds, his 3 siblings (also autistic but not violent), his dad and me.

We changed our parenting to try to ensure everyone’s needs were met.

We used Ross Greene methods with all the dc, we didn’t separate one out to be treated differently.

It’s hard work, impossible sometimes, but you do what you can to make things better.

Upthread did I really read a teacher of autistic children say that 90% were spoilt and it was the parents fault? Jesus wept. Wouldn’t want you within 5 miles of any of my children!

I know it sounds bizarre.

I can see the positives autism brings to her life.

I can see how she would be happier without autism.

It's so complex.

Good Luck! You'll need it.

My son has been on them since the first day they went on sale in Boots. I’d read about Equazen a few months earlier in a magazine and contacted the company. They told me when Boots would have them in and I was waiting for them to open up that day.

I'm surprised they'll keep seeing you if I'm honest.
If I were you I'd ring the surgery and tell them you will happily sign a disclaimer that you do not wish to discuss anything that may help you.
I work in a medical field and if someone is rude to me they can go elsewhere. Or if they want I'll offer them a form to sign saying they have no interest in any advice.

I'm sorry @stargirl1701 . I've only got two thirds of the way through this thread, but I could weep for you, your DH and DD2. And that's despite having spent a 40 year career teaching children with severe autism, focusing so intently on their needs and how they perceive the world, and constantly advocating for them.

But much as those children.mattered so much to me, their families mattered too. I can't count the number of times a mother or father has sobbed when they've realised they can trust me and open up to their own feelings. And your other daughter matters hugely of course.

Some of the responses you've had on here have made me so angry that I couldn't read any further.
I can't help you. I wish I could. But I do understand how you've reached the point you have.

I wish I didn't live at the other end of the UK from you.

@LilyPark

I'm not so good at the sparring! I end up flat on my back every single damned time.

DD2 is fabulous though. I hadn't really thought of it as a 'release' for her until you described it like that.

@saraclara Thank you 😘

Please take this advice.

I completely get your frustration - have a neurodivergent teen currently on the waiting list for autism testing too. (And extremely likely to have it).

But perhaps the difference is I am also neurodivergent (I don't think autistic, but I have sensory issues as part of my neurodivergence), so I get that they're seeing the world in a very different way, and responding to it in a different way than someone who is neurotypical.

Yes, behaviour can be extremely hard to deal with, but being confrontational is really the worst thing you can do. Taking away activities that help the child to self-soothe and calm (which might be longish periods of screen time) can exacerbate things.

When my child is having a meltdown, I've taken to wearing ear defenders, too. And I've found it keeps me calmer in those moments.

The only way I can describe it is thinking of times when you've maybe drunk too much the night before when you were young and you wake up with an almost head-ache, light is too bright, and you don't want any noises. You just want to creep around the house calmly until you feel ready to face the world.
Imagine then, in that frame of mind, being shouted at, or having something that helps - your soothing cup of tea - taken away for 24 hours. That's the only way I can begin to describe it.

I really feel for you - it sounds like you need some support. But with autism you're going to have to work with the child you have, not the one you feel they should be, because anything else is going to make things so much worse.

@Msplace

Still not RTFT I see.

I'm afraid that you can't separate the person from the autism. That's why many autistic people don't like "person with autism" because it's not an accessory that you can leave at home.

If I wasn't autistic, I wouldn't be me. It's core to my personality and how I perceive the world. It's why I'm good at my STEM job and is also why a crowded pub is my idea of hell.

I like what a previous poster said about reframing DD1 being in her room a lot and eating separately as not being punishments.

I don't like the sound of other people chewing and I don't know where to look if I'm seated opposite someone at a dining table. Meals out are challenging for me. Dinner table conversation is yet another opportunity for me to anger someone without even understanding why. And as for having to ask to leave the table as a child... just no.

I don't like living with other people and love having my own house with Dcat. Having even the most loved of relatives to stay is a "three days maximum" ordeal.

A neurotypical person would probably experience loneliness when eating alone and spending time alone and would consider it a punishment. For me and many other autistics, solitude is the most comfortable way to live.

It helped me massively.

You are responsible for her emotional regulation until she is able to do that for herself.

Feeding her first might help her. Meal times can be hell for autistic people. Noises smells. That's ok. We all eat separately as it meets the needs of their disabilities.

Keep her separate from her sister for both their sakes. Autistic kid needs space away from annoying sibling that may trigger meltdowns. (Intentionally or not) sibling needs space away from the meltdowns.

Tag teaming is good.

Have you had an occupational therapy appointment for her? You need to do daily therapy to help her be calmer. Look up techniques for autistic kids.

Get onto social services and ask for a carer's assessment. Don't let them fob you off. They will try.

School may be the problem. Pop bottle shaken up at school, you take the lid off. Meet with them when you go back.

Keep her well fed, not too hot or cold, well hydrated and look at her sensory needs. Weighted blankets, deep pressure firm hugs, heavy work work for many autistic kids.

Look to see if you are autistic. Seriously.

If you are not coping would it be better for you and DH to parent separately? One kid each different homes? Sounds dramatic but may be better for you all. You could swap kids for visitation so you only deal with a few hours a week.

Screens can be calming if you find the right things. Some games are not calming.

I’ve been there believe me. Authoritarian parenting was the way I wanted to go. Sadly if PDA is at play, you won’t win. Every demand you make will send her in to fight or flight and she sounds like a fighter (just like my son). If I remove his screen, we don’t sleep. None of us, neighbours included. It appears manipulative, it seems like they are incredibly selfish and narcissistic when in actual fact they’re terrified. Low demand parenting is the way forward, sadly there will still be issues. If my son has a bad day at school we all pay the price and don’t always find out the cause for many weeks due to him needing a long time to process.
I wish you luck in taking the authoritarian route, maybe it’ll work for you, but it won’t work for your child in the long run.

@BlackeyedSusan

I've covered all those points.

Yes, yes and yes again.

I have a lot more sympathy for the op than I did at the start of the thread, but the ableism from other posters is appalling. So much stereotyping and negativity about autistic people, much of it from people who claim to have autistic relatives or work with autistic people - it would not be allowed to stand if it was about other minority groups. The behaviours that NT people find so challenging are almost always a result of stressors in the environment and is driven by deep anxiety - not because autistics people are selfish, spoilt, violent cunts, whatever. Nearly all the advice on this thread has been about how to manage the op's dd's behaviour and hardly any of it has been about how to make the dd's life happier (which would also have the effect of making the op's life easier) - it is all about forcing autistic people to behave in a way that doesn't bother NT people and NT people will never consider changing their behaviour.