Growing up with an autistic sibling

[Pumpkin20222]

I grew up with a brother who is likely on the ASD spectrum - complete inflexibility, meltdowns and lashing out if he did not get his own way or there was a change of routine, social awkwardness, lots of problems at school. He needed help but did not get it, as my parents pretended everything was normal, everyone else was at fault and avoided any intervention from the school. This was a few decades ago, so less was known then.

As adults, it is very difficult to have a relationship as my brother barely communicates and is morose if anyone tries to engage him. He met someone who ‘doesn’t like being around other people’ (their words) and manipulates every single family get together into a disaster.

I had accepted the situation and moved on, but now we both have children who are getting older and the patterns are repeating themselves. My brother’s children show strong signs of being on the ASD spectrum and don’t really interact well with their cousin (one hurts other kids and then watches the reaction, the other hates noise and shouts insults over and over). I really hoped the cousins would have a relationship and want to facilitate this. However, the grandparents still trying to pretend nothing is wrong gives me a flashback to being little, effectively being abused and then told nothing happened. I am well aware that all kids can have difficult moments, my own included, but I step in when they do and would always try to minimise harm to any others. A local friend also has a child on the ASD spectrum and we make an effort to be inclusive, setting up a quiet area with their favourite things at parties, always having the food and drinks they like, and encouraging our kid to keep a friendship.

For a long time I have felt bad for my brother’s children who are not getting help, are anxious and not integrating, and have tried to push gently for assistance to be sought. This is hard to admit, but suddenly I am angry with my parents for this denial across the generations and the harm it has caused. No apologies for this last bit; I am absolutely not going to put my son in a situation where he is injured and insulted, then told it did not happen/he imagined it.

Sad, but also drawing a line. AIBU? Is there a way forward? How do others manage this type of situation?

YANBU ds has asd and whilst we have often had to out his needs as a high priority we have always worked to ensure his sister had opportunities to do things where her wants and needs were paramount. They are both older now and it means we do very little all together as a family but that's just how everyone is happiest.
Ds has had to learn that other people matter too.
Denial helps no one. Do what's best for you and your kid

Sounds like you have a good understanding if autism but agree it’s important you have your own boundaries around this.

my parents dismiss any “belief in autism” despite both myself and sibling being diagnosed later in life.

You just have to think whats right for you and your immediate family. Maybe down the line will get diagnosed and start to untangle some of his ways- but you cant bank on that.

Likewise he has to live his life in a way that works for him- its not fun being autistic and always feeling “wrong” and “difficult”.

its a really sad situation, i really feel for you x

Thank you for replying.

The denial is the nightmare in the situation, mostly for the kids with ASD who are not getting (or did not get) their needs met. For me the denial created fear, as although my parents did a lot for me there was always massive stress and the fear my brother would get angry, then our parents would rage at both of us.
Because it was never explained or discussed openly, as a child I could not understand what was wrong and I guess ended up feeling there was something bad about me.

I'd definitely be angry about that. My dd didn't get a diagnosis til 18. She's very low down on the spectrum and masks well. But her behaviours never impacted on her sister. If they had I'd have been looking for help.

Draw a line for your children. Any harm and you leave? Maybe cut down on meet-ups, I think you have to accept the cousins won't have the relationship you wanted, that's not you being against the autism, it's the way it's (not) managed by their adults.

Thank you dollyblack, sorry you have been through the situation of parents being in denial.

It must be tough for my brother, but my parents make it so difficult as even now they ‘don’t want him upset’. I think they are also starting to realise that their grandchildren do need help, but are afraid of the relationship being cut off by my brother and his wife. I hated the idea of strict boundaries around family, but realise I have to put them strongly in place to protect my own child.

Are you able to sit down with your parents, kindly, and talk about this?

it could go badly, they may not listen, but them tiptoeing around your brother at the cost of literally everyone else in the situation is madness.

i know my parents found it very hard to start thinking about the possibility of us being autistic as they see it both as a weakness on my part and a failing on their part (they created something weird or they brought us up wrong etc), a lot is generational and lack of knowledge. Also, very likely at least one of your parents are also autistic- thats the way it goes!

I'd love to know the answer on this. My eldest is as you describe your brother but about 75% of the time.

As single parent with no other support at all (no family) - I've no idea how I make it ok for my younger one.

Watching with interest.

@Pumpkin20222 - I also grew up with a sibling with ASD and the complete inflexibility, lashing out if they don’t get their way sounds very familiar.
It was really hard as a child to constantly have my needs ignored in favour of my sibling - to prevent their meltdowns inconveniencing our parents. It definitely affected my self esteem. All swept under the carpet.
I spent my teenage years helping my sibling with their social issues - their lack of friends was not down to their poor social skills but was blamed on me “stealing “ their friends. Absolutely no appreciation for anything I have done for ASD sibling. We are not close.

Look after your own child. This includes not letting their grandparents rewrite history.

Thank you notnowmonster. In tears reading this and remembering. So many similarities to this. If my brother had tried an after school or weekend activity I did, then kicked off and been withdrawn, I would have late been ranted at for 'putting him off', 'blocking his way', 'not letting him enjoy himself' or 'turning others against him'. No idea how, as I was a bit older so never in the same actual groups with the same leaders. Would have loved to have been able to do things together.

No idea how or why my parents tried to sweep this all under the carpet. My mother is awkward with others, does not like touch or eye contact, etc., so maybe it was a pattern being repeated.

I have tried and the old patterns of denial were so strong it did not go well. What I really struggle with is that the responses to any incident are so unusual that there is no resolution or way forward. I think it is likely my mother is on the ASD spectrum, so it is probably a pattern repeating itself and she did not have the coping skills or recognise the problem. Things have been so difficult I think my parents are also very afraid of losing contact with their grandchildren.

@Pumpkin20222 - looking back my late father likely had ASD. My mother is very concerned with what others think and wanted to portray us as the perfect family. No problems allowed as that might reflect on her parenting skills.

My ASD sibling is still difficult, still paranoid I’m out to steal their friends and still wants everything their own way.

I’ve had to set a boundary for my own mental health. Their behaviour made my childhood miserable, and they continue to treat me badly as an adult. I don’t particularly trust them around my child, as they deeply resent me. They actually believe that everything negative that has ever happened to them is my fault and nothing to do with their own actions.

It is an issue that does not get much discussion at all. Having been through it as the sibling, denial and hushing it up made things far worse as at a young age I felt like there was a problem with me or because of me, and I had no idea what the issue was.

Thank you Forrestgreen, absolutely will be drawing that line and sticking to it. We don't live close, so leaving is very obvious, but realising how much harm was caused I don't think there is any other option. It is frightening to see how this has gone down the generations and can still impact young children today.

As a sibling to someone with autism, albeit severe, so no hiding away from it, I think it is important for families to acknowledge the difficult role siblings play.
I am older, so possibly nowadays it's different, but I have lifelong mental health difficulties, along with other problems that could have been picked up on as a child had they not been so bland in comparison to the complex needs of sibling.
I don't blame my parents in any way, they did the absolute best job they could ever do, and I love them and have a good relationship, but growing up in an environment where everything was so difficult was traumatic. It also is an unmentionable thing. Something that has no answer because as parents trying to do the impossible, ie care and look after a high needs child while also protecting siblings, can only do their best.
I don't speak to my parents about how I am still suffering at the trauma of the environment in which I was brought up because, as a parent I know that would break my heart.
So, my advice to families out there is to not convince yourselves that everything is fine and dandy, acknowledge that it's not but it's the best you can do, and let it be ok for siblings to express their frustration, obviously not at the individual but at the situation.

Parents with autistic children are told that that child’s behaviour is down to bad parenting or ‘pandering’ to them. There’s next to no help now so there was probably nothing your parents could access.

I worry about the impact my older child has on my youngest one, but ASD kids are hard work, I know it’s not the done thing to say as it’s the person with ASD who is struggling but as there is a strong genetic element of autism I find the constant noise and unpredictability very hard to deal with and more and more feel that I also maybe Autistic.

I am autistic, and so is one of my children. Possibly both of them actually, but my youngest not diagnosed. They've both very young.

I feel for you OP. I was undiagnosed until late thirties and as far as I know, being autistic didn't affect my brother, we never knew and tbh I suspect he may be ND too anyway. We are all what people commonly refer to as 'high functioning' which is an absolutely rubbish label because it makes people think 'no support needs' but using to give you context here. I'm actually diagnosed with Aspergers and I suspect my child would be too if they still diagnosed it in children. People are always surprised when they learn that me and DD are on the spectrum because we're both bright, articulate and capable people who mask seamlessly (though I try to make sure she doesn't feel the need to wherever possible of course) but at great cost to our own well-being.

I am so conscious of the impact on my youngest when my eldest is having a moment. I make sure that the youngest doesn't miss out on any activities or play dates - if the eldest can't manage them for whatever reason, the youngest still goes and DH and I take it in turns to take her/be with the eldest so that it's not like she loses Mummy to her sister and Daddy takes her all the time, and vice versa. If the play dates are at our house and on that day the eldest won't cope with it, one of us takes her away to do something that she'll enjoy too - even if that is only going over to Grandmas and having some lovely quiet time there - so that the youngest still has her friend over.

If the eldest has a meltdown, the youngest is shielded from it, as best as I can, and she's never in a position where her sibling could hurt her. She's not generally violent anyway, but in the moment in a total loss of control meltdown she can hit and kick.

Having autistic children is really really hard but in my view it's not ok to let the autistic child totally take over the family to the detriment of other children if you can possibly help it. We're in a fortunate position that we have both DH and I here, his work is flexible and 'from home' some days and I'm a stay at home mother. I have to be, really, at the moment.

I appreciate for single parents it must be an impossible juggling act - I'm not judging, truly. It is really really tough.

I think OP you're right to look out for your children. I hope that they are told that their cousins maybe can't help their behaviours, but that they are no reflection on your children or their 'fault'. It sounds like you have a good understanding of additional needs. I am 100% behind you with looking out for your children's wellbeing and I don't blame you for feeling cross and resentful.

Remember : Those who choose to ignore history are bound to repeat it.

My DD now 18 was diagnosed with Asperger's at 8. It made me a better, more forgiving parent to her and myself. My goal has been to get her to adulthood with lots of skills, confidence, empathy. Sometimes slower than peers but getting there (enjoying meals, music groups, supported holiday job at 15 now ridiculously brilliant at customer service) She has autism but that is not the most interesting or outstanding thing about her.

My niece's,17 & 14, parents my bil & his wife have taken a different approach. They fought hard for the diagnosis and now it's all about the label. It's weird and infantalising and the kids are going off the rails. Lonely or underachieving at school. Poor personal hygiene excused on sensory grounds rather than getting a grip of a teen or building small steps to the future.

The mutual grandparents are in complete denial, partly out of fear of losing contact if critical. Partly because it's clear their two sons are a common link and they fear the old school accusations of genetics or poor parenting.

We have stepped back from frequent wider family contact. We needed to set and celebrate our goals not undermine them. It's sad and I used to really believe 'village raising' ethos but the gap is too wide here.

As my dd's reached teens, my own childhood memories went from photos and family annecdotes to my first hand memories, I found a lot of anger towards my parents. I have a golden child younger brother. It's made me again a better parent, I'll never push that devisive harm and unfairness on my kids, so see that as a positive.

Best wishes, well done for acknowledging and looking for positives, that puts you more than half way there.

YANBU. I know its tempting to want to step in and have you r say, or even fix things; but its very unlikely that anything you say will make your parents admit what they did was wrong, or apologise, or change what they do now.
I wonder if there's also an element of scapegoat and golden child going on here? If that's the case, they will always side with the golden child and his children, to the detriment of you and yours. Its tough to accept, but the only sane solution is strong boundaries and the ability to walk away if you need to.