Feel sad and frustrated that we can never have a normal life

[lana88]

Feeling really sad and frustrated at the moment. I'm in my mid-20s and my birthday is coming up. I've been extremely busy this past year and was looking forward to going out for a meal with close family, as I don't spend much time with them.

I saw them today and when I mentioned it, my dad arranged a date for us to go to a restaurant but then my mum said she wasn't going because of my brother and therefore there would be no meal.

My younger brother is 22 and has autism. I have had to make lots of sacrifices throughout my life for him - his behaviour is very volatile and he will kick off in public over the smallest thing. As a child/teenager, I was never allowed friends over to my home, we have never been on a family holiday, we can't have days out as a family etc. I feel that my childhood has been very abnormal because of him and I have spent most of my life walking on eggshells in my own home in case I unintentionally upset him and cause a massive tantrum, in which he will self harm, lash out, wreck the house and just cause massive emotional stress.

I feel so sad that I can't have my family together for a meal to celebrate my birthday. Last time we tried to go out together, he threw a fit because a fly was in the same room and began shouting, self harming, lashing out at my parents etc. It's difficult to see a grown adult acting this way but he's had a lot of behaviour therapy and nothing helps. I'm starting to think it's not just the autism as this happens an awful lot when he doesn't get his own way. It's to the point where my poor mum doesn't want to go out in public with him because of the way he behaves. People stare at us all the time when he kicks off and in the past, people have even tried to intervene when he's been violent towards me in public.

I feel so fed up about this. I would just like to have a family meal to celebrate my birthday, like any other normal person. But what can I do? Just needed to rant, thanks for reading.

I have no personal experience of living with somone with autism, so apologies if this is not appropriate. Worridmum mentioned her elder brother who is in adult care. Would not this be the way forward for the OP's brother?
His behaviour seems so extreme, indeed frightening, that trying to contain it within the family sounds a hopeless task. As several posters have pointed out, eventually this is going to hapoen anyway when parents are too old to cope.

As the mother of a teen with Autism, I am very aware of the impact it has had on my daughter (who is a couple of years younger). I often feel that she has bourn (?sp) the brunt of his behaviour. He can be very volatile and will spend hours arguing and insulting all of us and cannot be reasoned with. I feel that his behaviour and needs have had a massive impact on her childhood - perhaps even robbed her of a normal childhood. His needs have also 'robbed' his dad and I of the chance to parent in the same way that our friends can and do.
Austism is difficult for all family members. I am worried that my daughter will grow up to resent us for the time that we have had to spend dealing with my son's needs. At no point have we ever thought that her needs were less 'deserving'.
Autism is tough - made tougher when your son tells you he just wants to be normal (whatever that is).
I'm really just rambling on and not offering anything constructive. I guess, that from a parent's perspective, I just want to say that none of us set out to be poor parents but life throws rubbish hands at us sometimes. I do all I can to 'normalise' my daughter's life.
The positive I can take from it is that, in some ways, having a brother with needs has allowed her to develop a social conscience that she might never have had. She is kind, caring and very vocal about how unfair society can be to those with difficulties.

I feel great sympathy for you. My experience of Autism has only been with children in mainstream schools, so fairly low level, but we do notice the impact it has on their siblings; they were usually subdued, obedient, and sometimes quite repressed, and we wondered what effect it would have on their future lives.
I'm starting to think it's not just the autism as this happens an awful lot when he doesn't get his own way.
I have heard this sort of comment from Learning Support Assistants, totally dedicated and committed to their charges but able to take a more objective view than family. There is not nearly enough support for carers of severely Autistic people; your parents need far more respite help.

Goblin
This perpetuates the myth that families can't see clearly. Most of us can, but there we are, in schools being told that our child is manipulating things because they don't like what's going on. Yep, that is the case. They don't like what's going on, so they play up. I have met, whilst looking after four children, three with ASDs, two teachers, two, who when one of my children played up decided to have a look at why, what they were frightenend of, what was distressing them, and change it to suit said child. Don't dismiss this aspect of ASD because it's an unpleasant one. It is often fear that makes a person do this. Fear of change, fear of others behaviour, fear of the staff reaction if the child/person concerned actually states that they don't like what is happening. It is the autism and it happens a lot when some people with ASDs don't get their own way
Why? that is the important question.

Learning Support Assistants, totally dedicated and committed to their charges but able to take a more objective view than family.

If the LSAs and teachers who thought they had a more objective view than I did had had their way, my DDs would be without diagnoses, support, statements and appropriate school placements and I would spend my whole life on parenting courses.

LSAs and other people outside the family only see part of the picture. They don't know better than the parents who see the whole child and are generally better able to differentiate between anxiety induced behaviour and the child pushing the boundaries. It is very easy to make snap judgements based on very little evidence.

We don't know for sure why the OP's parents feel unable to introduce changes to their son's life and it's not up to us to criticise them for not having done so. All that matters is that they get the support to start making changes in a manageable and controlled way before they are forced on them in a much more traumatic manner.

The hallmark of ASD is a need to control thr environment to feel safe.

Not out of some sense of brattishness.

Bit depressing that a lot of LSAs talk about children with autism in these terms.

I don't believe that most LSAs are more objective than the families of their charges.

They just often think they are.

It is hugely patronising but there you go. People love to get a little knowledge and assume they know best.

Every parent I know of a child with ASD kbows their child exceptionally well due to constantly having to manage their needs.

I can just imagine the outrage if someone posted that a TA or teacher knew an NT child better than their own parents did.

Indeed.

Exactly coppertop.

OP, I don't know anything about your specific situation, but when I was a bit lonely in my mid 20s and university friendships had fizzled out as you describe, I found the Ramblers clubs good for getting out at the weekend amd meeting new people. Fresh air can take your mind off intractable problems, at least briefly.

OP my DS1 could have written your post about my DS2. It is affecting him severely- he is angry and broken hearted about his brother and it comes out in lots of different ways.

Autism sucks.