To really strongly dislike my autistic child

I have lots of sympathy. It sounds incredibly hard. I am appalled at the lack of sympathy. The truth of the matter is that some ASD children are not very likeable - screaming, tantrums, sulking and no sign of affection back aren't things that parents thought they were signing up for. The child can't help it but that doesn't help the parent. I hope you get some help and wouldn't blame you at all for your feelings. Parents with neurotypical children just can't comprehend what it can be like in your situation.

When at home my son constantly wants to be out and going to these places as he is constantly demanding it. When I take him to these places and give in to what he wants the whole day will be ruined by him constantly kicking off every 5 minutes. We use ear protectors etc. He is sensory seeking not an avoider.

Wanting something and being able to cope with it are two different things

Sometimes I just feel like with school, gp etc does it take me to have a mental breakdown for anyone to wake up and realise that I need help because at the moment none of them are listening

Yes. IME they have a mentality that if they can't see it, it doesn't exist. Meaning the people who can control their behaviour and carry on, get ignored. Nobody likes a drama llama, but is it any wonder people behave this way when it gets them what they need?

Hi OP.
I know mombie2021 from the autism pages on Facebook, would recognise her writing style a mile away. She's always like this, ignore her. She always knows best
Nobody can understand your life, least of all the protected characteristic brigade who can communicate, who can toilet independently and who managed to pave their way in society having children/relationships:/lives.
It's vastly different to caring for a child with severe behavioural needs and severe learning disabilities for the rest of your life. I can't understand how they dare have such a strong opinion on your life. They'll never, ever understand what it's like.
I hope you're alright.

It sounds really tough OP. No one should be judging you for expressing these most difficult thoughts and feelings. You can’t help your thoughts and feelings. They are what they are. But anyone with an ounce of compassion will know how hard it is, as a parent, to have them. I think it’s honest and healthy to talk about them. With help and support, hopefully you can figure out a way to improve things for all your family’s benefit.

I think the idea of simplifying your life as far as possible is the first step to take. If you can keep your DS calm for more of the time, then this will help create space for other things. Identify the times your DS is happiest and most calm. It might be watching TV, lining up toys, being in a sensory room, going to the local park (some people with autism do enjoy going out). Make these the key things you do for a while.

Then look at other ways to help your child, depending on his particular needs as you understand them. Creating routines (morning, bedtime), visual timetables to show the routines, simple instructional style language, reducing sensory discomfort wherever possible, are a few that might help, off the top of my head.

Look for support wherever you can. Contact social services and ask for a needs assessment for your child and a carer's assessment for yourself. As a child with a disability your DS is a ‘Child in Need’ (different to Child Protection) and you may be able to get some respite provided. As soon as you have baby number 2, contact Homestart. They are a volunteering organisation that may be able to support you. Apply for DLA if you haven't already. This will provide some financial help to enable you to get a cleaner, pay for one of those meal package deliveries occasionally, or whatever else might alleviate the stresses or meet the extra costs of coping with disability within the family.

Once you’ve started to recover your emotional resilience, you can then start thinking about longer term strategies, such as the best educational placement for your DS. There are lots of organisations that can offer free guidance on all matters SEN related, and slowly but surely is the mantra with this.

Take it a day at a time right now OP. Try and let go of expectations of what should be, or what you thought it might be. The truth is, many, many people have difficult and stressful lives, even if the likes of Facebook and Instagram would have you believe otherwise. You are not alone.

YANBU at all. I've felt very similar about my DD at times. That draining "just leave me alone" nothing ever being enough for them feeling is soul destroying. I'm sorry I don't have anything constructive to add but I just wanted to send some solidarity and I hope you get some RL support

OP don’t be hard in yourself. I think you are experiencing something called blocked care. It’s really common when parenting children that are challenging in some way. Parenting takes a lot out of us - lots of physical and emotional energy. What keeps us going are little hits to our reward centres in our brain. I’m simplifying this, but if you aren’t getting cuddles and positive feedback then you aren’t getting those little hits to your reward centres. This, and other things, lead to feeling blocked in your care. The jug gets empty faster.

The absolute first thing you need is a break and some self care. Your jug is empty and needs refilling. You are not alone in this.

I wish the most helpful forms of therapy were available through statutory services but I doubt they are - but it might be worth checking out if you can access DDP somewhere.
Don’t beat yourself up. This is a human response to a very difficult situation. It does need working on though or both of you will continue to suffer.

Wishing you the very best. You’ve got this far. What is it in you that hasn’t given up yet? How have you kept going? Sending you

Poor kid.

OP, you may need your h to stop working so much and give you a hand. You may need his time more than you need his money. Money is not worth making you ill.

You may need to get your head round not getting any meaningful help from services as quite a lot of them can be quite shit. some make it worse. (as you are finding out. ) take what you are offered if it works for you and work on adapting your life around getting your own support, be that from husband or family or cutting out stuff you do not need to do.

I’m autistic and ‘have that protected characteristic’. I’m also bloody horrified at some of the responses to this OP.

The "why have another kid" is appalling, but saying that a day out might be hell for him, well that is true. it might be. it is certainly hell for the op and that is good enough reason to stop it. I didn't see a lot of the deleted posts so no idea what they are.

saying the kid asks for days out, well my kid asks for chocolate, but lots of it is not good for them. a bit in moderation. (see my previous post on trying for half an hour out first) or perhaps another analogy is a child with an allergy asking for the allergen. maybe a biscuit with baked milk in is fine but a whole cup of milk is going to lead to disaster. and vomit 6 foot up the walls just because a kid wants something does not mean it is good for them.

no kid owes you cuddles... that is true too. a fair proportion of autistic kids hate cuddles. (too tickly, too close too much contact) others like them and want loads. there are always threads about not making the kid kiss grandma knocking around on mn, and letting the kid have choice. It is no different with an autistic kid, especially if it is actually painful for them. (and yes I do have a kid who hates cuddles)

There seems to be a lot of NT people on the thread judging disabled people for the way they communicate and for sharing their experiences.

Hi OP wish I could give you a big cuddle right now. I’m a SEN teacher I work with non verbal ASD children with GDD. It’s bloody hard, I’m covered in bruises, I’m tired and drained at the end of the day and I get to finish at 3pm I get to have 8 hours unbroken sleep. I’ve had parents say the same thing to me in tears then get all scared about SS. They are just exhausted and at the end of their tether.

Please ask for support, are there any Parent Support Groups around? The parents I know say these are the best way of getting support, meeting people who know exactly what it feels like and just getting out. Talk to the school to no one will judge, they will be able to help. Be kind to yourself do whatever you need to to survive there’s loads of kids I know watch tv or stay on an iPad from when they come in from school until bedtime and eat McDonalds chips every night (not that I’m saying that’s ideal) but do what makes you DS happy, let him be autistic

OP, you have all my sympathy. I know how tough it is (parent of a young autistic adult) and I know how you have to fight for everything. It is exhausting, even without throwing pregnancy into the mix.

At this stage, you have two priorities. One is to get a break yourself. You need to dedicate a couple of days to trying to get action from your council. In my area you need 'short breaks', which sounds like more fun than it is - it's an allocation of hours for you to spend on having someone take your son out, or sending him to a Send-specific activity. You also need to set the wheels in motion with your council to get him a social worker. I really kicked against this myself but I was wrong. And you need a carer's assessment for your own needs, especially now that you will have a new baby.

The second thing is establishing routines, if you haven't already.

Regarding going out, I have developed a very thick skin. The National Autistic Society used to have little cards that explained autism and asked for consideration. I had a bag full of these cards, but I never actually gave any out - I think that knowing they were there gave me confidence. (That, and my death stare.)

The autism page is a very useful site, written by a mother with young children.

Hang in there!

I live in the netherlands and know exactly what bluntness is. This isnt bluntness, these are just terrible posts.

I've also got an autistic son and he'd be bloody horrified to read how some people have spoken to the OP.

The op started with saying she strongly disliked someone with a protected characteristic. People with the same protected characteristic are going to react to that and are possibly more forthright about it.

You will also find that people with that same protected characteristic communicate in a different more direct style. this is not rude or uncaring in our community.

People with autistic kids are going to be dirrect and communicate like it is asap as we don't have bloody time to sugar coat it, what with having autistic kids and all that.

some people with autism are going to react at the description of days out with horror due to their own autism. We may have come across many NT parents who do not make adaptions for their autistic children and then wonder why things go tits up.

Awful as I may sound, I feel for parents with children who are very difficult. Equally awful, I’m not sure I understand why you’d have another? I do think there ought to be automatic respite available. I’m not sure parents with neurotypical children understand quite how hard it is to live with this on a constant.

my kid has aspergers, the best thing for him is a nice long quiet walk, he likes staying at home and using the computer.

going shops and things is like pouring sugar down the throat of a ADHD kid let alone days out and I dont know what you mean by never enough, they get over stimulated.

**Yes me and his father have been together throughout his life. He has his own business and although he is very supportive the main caring is down to me as he is out of the house most of the day providing us with a good financial income

Does he know how you feel? You sound like you need respite. Speak to your husband and see if you can help each other- if he knew how you felt maybe he can take some time off to give you a break. I hope it gets better for you x

And what has made the difference IS getting to know him, understanding what he can and can’t cope with, how he can recognise how he’s feeling and what we can do to help him.

OP, you can do this, there may be help out there, try and get an OT assessment.

Thank you!

sorry to derail OP but given the appalling posts on this thread, i wonder if anyone might be willing to support a request for a change in moderation policy

www.mumsnet.com/Talk/site_stuff/4358028-Request-for-tighter-moderation-and-a-supportive-attitude?watched=1

Some days I am utterly overwhelmed by my ASD child. I respond particularly badly if he hits me, or worse chases me, or jumps out on me. I also just find his constant babble at me, demands on me too much.

I suspect I may also be autistic. I often disappear off to another room and sit quietly.

It’s really really hard OP. I get it.

Some posters on here just don’t get it. You can do everything right. Your whole life can revolve around meeting your child’s sensory needs and accommodating their routine. And still they scream.

It’s not because we don’t know them, don’t listen to their cues, don’t observe their behaviour, force them to be ‘normal’. It’s because they are unable to regulate, are unable to control themselves, unable to communicate in a meaningful way even when ‘high functioning’ and articulate.

It does get better by doing these things but not overnight. My child has matured a lot and the meltdowns have subsided. Unfortunately I have a younger sibling doing the melting down now and awaiting assessment.

You don’t hate your child, OP, you hate this situation and who wouldn’t. You need support.

If you work in the same field as your son - could you have compassion fatigue by the time you get home?

Sounds really tough op, no advice. You've some some good ideas on this thread though

Pffffft

I’m sorry you feel completely helpless and that nobody is helping you. Please though, don’t have a breakdown. As much as it is hard your little boy does need you and you’ve come this far…

I'm a Social Worker with Children and Families. I wish that asking mothers not to have a breakdown had been covered in my education and training. That would definitely have made the past 20 years so much easier for me.

FFS

If you have the money look at paying for respite care now. Even someone or two people of needed tontake him out for a couple of afternoons a week.