second pregnancy

Hello, I'm new and struggling so wanted to post, wondering if anyone might be able to say something that helps shift my thinking and how I feel.

I have a gorgeous little nephew with ASD, undiagnosed at present but after having worked with children alot and having my own, I can see that a diagnosis is just a matter of time; I can also see that mainstream school will never be a good match for him.  That we have no idea how much level of care and what help he will need into adulthood yet. 

My brother has announced they are expecting a second and I feel pretty angry about this; I feel they have no idea what their first borns needs will be yet, but I can see it is going to be anything but easy, fighting for help and services and dealing with his frustrations.  It feels selfish and reckless, not an adult decision.  They recieved no genetic counselling, just jumped straight in.  

I know I need to respect my brothers choices here but I am worried this second born, which is a boy, will be more severley affected.  I also feel concerned because the mother has a severe mental health problem. 

I love spending time with my nephew and he gives us all a lot of joy, but it is really hard work for very little if anything back in the way of interaction, I am worried he will always struggle to make friends, at the moment this is completely unimportant to him. 

I also feel they have no real idea of the increased level of support they are going to need from a family of 3 to a 4 and as he grows, like they haven't considered this at all. 

Sorry in advance if my email offends anyone, as this is not my intention, I'd really just like to feel better about this and thought this may a good place for me to work through it.  Ive been sitting on this for a while now and I don't like feeling this way. Thanks

Parents
  • Firstly it is obvious that you have good intentions and care alot about your family.

    But as you have stated they have no idea what care your nephew will need in future, well neither do you! 

    Also why would you assume that the second baby boy would be more severely affected? I have 4 children they are nt, asd, nt, and the baby is to young to tell. You have no idea if the second baby will even be autistic let alone "more severely affected" 

    You mention how much effort it is for little interaction from your nephew, I really hope you do not say this in front of him as it will really negatively impact him in the future. Social skills can improve as he gets older but please don't judge him against nt peers, I suggest you look into some actually autistic groups, they can really help you to understand alot more because despite how much you love your family and that your intention is to help, this feeling is really damaging imagine if you heard someone telling your parents that they shouldn't have more kids in case they turned out like you, would that be good for your self esteem.

  • Thanks for your reply, really. He doesn't register what people say, and he doesn't speak, rarely engages, he's in his own world. I wouldn't dream of being any less than positive around him. I love and accept him the way he is and just try to engage him in things when I'm with him or try to help calm him which isn't easy and can take a very long time.

    When I say we don't know what care he will need yet, what I mean is he will always need care, is vulnerable, but we do not know how this will look or what will be available to him, but I know from friends that it is always a struggle and a fight for services; reading the posts on here shows me this also.  He will not be entering mainstream education. The only guarantee is that he will have the support of his family, while someone is around of course (then where if this is needed?). When I refer to friends for him, what I mean is, this seems doubtful.  

    I read that statistically second born children are often more severly affected and there is a 19% likleyhood of the next having ASD following the first, third born more again, so that is where this has come from, but yes I agree, we'll just have to wait and see now won't we. I am still struggling to see how they will manage.

    They have very little money, no home space, no garden, only one bedroom between them and they isolate themselves; they don't have much support nor do they seek it or like to accept it.  I'm hoping this will change as they are going to need it. I will always do what I can to help, but what I can actually do is very limited. Perhaps in years to follow he will be able to come and stay with me for a night or two? But at present he couldnt cope with that and they wouldn't hand him over anyway because they fear no one else could look after him like they do and meet his needs. 

    Yes my concern does come from a place of love for sure, there is absolutely no predjudice within me; I am however also a realist.

  • Ok, I may have misinterpreted how you came across, as for the statistics you mentioned I would be interested in reading those studies, 

    Regardless of that it is worth noting that just because he doesn't acknowledge what you are saying or speak doesn't mean he doesn't understand my partners cousin was completely non verbal didn't interact at all until age 8 when he just started talking and repeated back all the things he had heard! I'm not saying that this will happen in your case but it is worth remembering

    Try not to focus on what he cant do that is not helpful look for the positive,  so what if he wont have "typical" friendships it doesn't mean he wont have friends, . 

    Encouraging them to engage with support services would be helpful such as speech and language and local support groups, also check to make sure they are getting any financial support that they are entitled to. This can help massively. 

    Have they looked at different communication options like pecs or some other AAC? 

  • Have you tried suggesting they look at autistic led groups? I found several online, like this forum that allow you to gain insight from autistic adults they really are the best source of information. 

  • This is disappointing to learn; there is always the problem of navigating conflicting information isn't there. At the end of the day it's up to them and they have to find what works and what doesn't I guess, that's just part of the process, but I will feed this back, thanks 

  • Eye contact is physically painful for alot of autistic people and trying to force eye contact is not reccomend. It is more for him to process ie he is trying to process visual information as well as everything else leading to confusion!!

    https://www.autism.org.uk/get-involved/media-centre/news/2017-12-11-gy-school.aspx

    That is an article about a school forcing pupils to make eye contact and the response from nas. 

    Small steps with pecs 

Reply Children
  • Have you tried suggesting they look at autistic led groups? I found several online, like this forum that allow you to gain insight from autistic adults they really are the best source of information. 

  • This is disappointing to learn; there is always the problem of navigating conflicting information isn't there. At the end of the day it's up to them and they have to find what works and what doesn't I guess, that's just part of the process, but I will feed this back, thanks