If you have a sibling with ASD

[Aroundthelight]

If you have a sibling with ASD, have any of your own children been diagnosed with ASD?

Was reading the results of this study www.nih.gov/news-events/news-releases/autism-risk-estimated-3-5-children-whose-parents-have-sibling-autism and interested to know other people's experiences.

I have a sibling with ASD and have two small children, neither have any ASD symptoms.

@legotruck

My children are really happy.

I feel like you are being deliberately obtuse here.

Not at all. I have two happy kids who have their needs well met.

They are in suitable educational settings.

They struggle sometimes. All kids do. When they struggle I struggle too. I wouldn't say that the struggles outweigh the joy.

On balance they are far better off here than never having been born. And as someone who is also disabled I am pretty glad I was born too.

@floofyhens

Not having children because you know they have a higher chance of being disabled is eugenics. Ditto Down's syndrome. Ditto spina bifida.

I'm not interested in creating a perfect race so I went ahead and had two kids. They're amazing. One is autistic and attends a specialist school. The other has traits but not enough to warrant a full diagnosis. I'm glad I had them both. The world is a better place for them being in it.

All those posting about risks have absolutely no idea how offensive you are being.

Great for you, I really do mean that. It's great that your ND children are fulfilled and happy, and they make you happy too.

But it isn't about making a perfect race. You mention Down Syndrome and Spina Bifida. Many many people choose to abort those pregnancies, because of the often extreme difficulties that come with a disabled child.

My son is severely autistic. Severely. He will never be able to live alone. He can't speak, but worse yet, can't understand. What's so good about that?

I have many friends in my community with children that can't speak or walk. Many are incontinent. 'What's so good about that?'

Their smile when they see you in the morning.

Their eyelashes.

The feel of their palm in yours.

The way they jiggle/shake with excitement.

Their absolute and unconditional love for you.

The way they bring joy and happiness to others.

@floofyhens You seem to use a lot of 'I' and 'MY' in your posts. And your experience is exactly that - Yours! There are thousands of people suffering terribly with autism. And their families too. There aren't really any positives to my DS's condition, as is the same with many ASD individuals. He's taught me a true form of unconditional love, love beyond any limits at all. But really, if pressed, would I rather just he had no ASD and we lead normal lives? Of course

I'm not saying it's you, but you do remind me of ASD individuals often insisting their struggles are just the same as someone like my son or other very severely impacted people with ASD, that cannot speak, cannot really understand, and have constant difficulties and struggles that leave them completely disabled. I'm not sure why others with ASD who clearly can function better, not because of how they appear to others but their natural abilities and ability to cope with the world and do well for themselves, often articulate like yourself, can compare themselves to my DS

@floofyhens

I have many friends in my community with children that can't speak or walk. Many are incontinent. 'What's so good about that?'

Their smile when they see you in the morning.

Their eyelashes.

The feel of their palm in yours.

The way they jiggle/shake with excitement.

Their absolute and unconditional love for you.

The way they bring joy and happiness to others.

All about you and nothing about them

Maybe I knew what I was letting myself in for. Maybe I went into it with different expectations. But I know other families with autistic children that knew the odds and played them anyway.

My DS has some speech, is partly continent and has the understanding of someone approx half their age. I still wouldn't want them any different. I don't know who that child would be. I only know this child. And I have to accept that.

My DS has some speech, is partly continent and has the understanding of someone approx half their age. I still wouldn't want them any different. I don't know who that child would be. I only know this child. And I have to accept that.

It's not about eliminating the child you have though. Are you seriously telling me you would rather a child who suffers? Surely not? No parent would choose that.

yup, sibling has it, so does my kids... they have near identical co-morbids too!

@floofyhens Do you not think I accept my son too? Because I do. I accept him with all my heart. There is no changing him. That's a fact.

But if some strange way existed to take the ASD, or more specifically the severity of it, away from my DC then of course I would. It's not something I'm fixated on. But it's there. It doesn't mean I don't accept my son

You're assuming I don't put my child's feelings first, which is so far from the truth is laughable. My children are my entire life. I know when they are happy and I know when they struggle, and I work hard to mitigate those struggles.

But they are doing great because of me and the work I put in, and the work of their teachers and teaching assistants.

Am i allowed to speak up as also Autistic, with an Autistic child (i was just answering OP in last post)

Floofy, you need to back up. No-one is attacking you, your kids, Autism, or making out you (or me) shouldn't be here.

Everyone is ALLOWED to make their own choice about whether they want to risk having kids who are born autistic, as is anyone who knows they potentially have a genetic difference that can cause impairment in any children they have.

It's not up to us to police that, OUR job is to raise our kids, advocate for them, and for the adjustments that will make living life with Autism easier for those who're able to be independent, and for those parents/carers who are caring for autistic folk who can't care for themselves.

I did not say you don't put your kids feelings first.

I don't know why mumsnet deleted my comment, it wasn't attacking or anything like that?

You have accused me of saying something I didn't say more then once in this thread.

I don't know if you are deliberately ignoring what is being said or if you genuinely don't understand but I am taking about the difficulties disabled children have, not the joy they can give. Their comfort is more important than our smile.

As long as they have lovely eyelashes I guess

I don't have any kids yet, but my sister has autism and this has defo crossed my mind. I have to say I will be worried and also vigilant with any children I have and their milestones.

[quote legotruck]@TurquoiseLemur

An emotive subject and I'm not here to be anyone's voice except my own, however I do feel perhaps the learning disabilities are a huge part of why your son can't 'choose' to mask etc.

I'm trying to post without being offensive but it's hard to know how to put things.

I think it's equally wrong to deny autistic people who are more able (?) the right to terminology that they relate to just because your child has other diagnoses.

And I am so sorry if I have written this incorrectly, I am genuinely not trying to fight or cause upset. I just done think anyone should be dictating who and what people can refer to/call their disablity. [/quote]
I don't think it is ONLY because my son has learning disabilities that he doesn't mask. His paternal grandparents (definitely autistic but not formally diagnosed) both have PhDs, and actually know very little about autism (they don't read the papers or much else at all in fact, don't watch TV or listen to radio, and are rarely online) and THEY don't mask either.

I am not trying to deny people the right to terminology that they feel describes THEMSELVES. I do object to more "able" autistic people generalizing about autistic people as if they are all similar. In the past couple of years or so there have been several articles in the Guardian, for example, written by autistic people and all of these articles are guilty of this. One author appeared to assume that all or most autistic people are academically able. She herself is a physicist. She wrote something like "Not all autistic people excel at maths or physics; some excel in literature and the arts." No mention at all of the many autistic people who will never get GCSEs or be able to pursue a career at all.

Articulate people who can write articles have more clout than those who aren't articulate and don't write articles. This media focus on high-achieving autistic people is feeding a lot of misunderstanding. Especially when a lot of those articles are not open for comment below the line.

I don't think you've written anything incorrectly and I'm not upset. You have made good points civilly. Thank you.

@legotruck

Looking to be offended?

I took this from the fact you have used the term twice in just a few posts, yes.

You literally just said, very emphatically, that the world would be a better place without my children in it.

No I fucking didn't.

No, you didn't say that. You have pointed out that having a disability is hard; it is. I love my son to bits but it would be great if he didn't have the problems that he has. Great fro HIM.

The accusation that we are all eugenicists wanting to create a perfect race? Well, that is a very big accusation from floofyhens and I deeply resent it. We are not fascists just because we acknowledge our children's struggles and our own.

@floofyhens

You're assuming I don't put my child's feelings first, which is so far from the truth is laughable. My children are my entire life. I know when they are happy and I know when they struggle, and I work hard to mitigate those struggles.

But they are doing great because of me and the work I put in, and the work of their teachers and teaching assistants.

Again, this is all about you.

The other parents here (unless I've totally misunderstood) are ALSO devoted to their children, ALSO know when they are happy, and we ALSO put in a lot of work along the professionals who work with them?

Yet you have made several sweeping assumptions about us. You have told us we all support eugenics. You have said that we would be happier if your children didn't exist. You have written as if you are the only person who helps and supports their kids. You are so wrong about this.

[quote cherryboos]@floofyhens You seem to use a lot of 'I' and 'MY' in your posts. And your experience is exactly that - Yours! There are thousands of people suffering terribly with autism. And their families too. There aren't really any positives to my DS's condition, as is the same with many ASD individuals. He's taught me a true form of unconditional love, love beyond any limits at all. But really, if pressed, would I rather just he had no ASD and we lead normal lives? Of course

I'm not saying it's you, but you do remind me of ASD individuals often insisting their struggles are just the same as someone like my son or other very severely impacted people with ASD, that cannot speak, cannot really understand, and have constant difficulties and struggles that leave them completely disabled. I'm not sure why others with ASD who clearly can function better, not because of how they appear to others but their natural abilities and ability to cope with the world and do well for themselves, often articulate like yourself, can compare themselves to my DS [/quote]
All this.

I gave up on a friend who insisted that her struggles were the same as my son's. She got a late diagnosis, a very capable person who has several degrees, has had books published, has taught, has a spouse and child, earns decent money. Yet she insists that my son and her are broadly similar. My son has the type of speech we'd usually expect from a small child (he's 23), attended a succession of special schools, and is now as a young adult heavily dependent on the state for disability benefits and for educational and social provision.

It almost beggars belief that a person intelligent in so many ways can make such a preposterous claim. She hasn't a clue. I don't expect my friends to understand everything about my son but I don't want to be around someone who is as insensitive as this.

Nephew is diagnosed with autism. DBRO definitely has the same tendances but never diagnosed.

I have a child (5) with ASD and a PDA profile and I am currently going through the assessment process myself.

My child has no learning difficulties, quite the opposite in fact. She struggles socially to the point where she has 1-1 support under an EHCP in a mainstream school at all times and was diagnosed at just age 3. But she copes, she functions well and is enjoying school. She's as capable as most NT 5 year old children are in respect of academic learning (so long as her needs are met), toileting, personal care, eating etc etc. People who don't know us well often don't realise she has autism because she doesn't fit the stereotype and masks outside of home.

I also have my struggles but I function day to day fine. Some I suspect because of years of learned masking/creating coping strategies without knowing that's what I was doing. I (jointly) own a house, I'm in a happy marriage, had a career before a I was a mum, I drive, I pay bills - I function as well on the surface as most NT people do I just find it much much harder.

I would never, ever compare my child with a child some of the PPs have described. Yes they (we, mostly likely) have the same spectrum condition. Thing 'thing' that makes us different is, in origin, the same. But it's like comparing apples and oranges. It's actually quite offensive I think, and does a real disservice to people (and their carers) who struggle massively every single moment of the day. Is my parenting life hard, harder than that of a parent with a NT child? No doubt. It is exhausting. But is it as hard as that of a parent whose autistic child cannot communicate, cannot use a toilet, does not eat, and is unlikely to ever be able to live independently? Of course not. It's not even comparable.

Oh and for the record, even though my daughters autism is much less 'severe' to deal with than a lot of parents here, if I could take it away for her then I would, in a second. If I could cure her, I would. If I could have taken a tablet when pregnant to ensure that my baby wouldn't have autism, then I would have.

That doesn't mean that I love her any less, and if I could go back in time and know she was autistic in advance then I would still choose to have her, autism and all.

I just wouldn't have chosen to give her a life where she finds things so much more difficult than everyone else, if I could have stopped it and still had her.

My goodness, I just found your post and it’s exactly my situation, every bit... I hope you’re doing well!