Published on 12, July, 2020
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
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.
If 'there is a 19% likelihood of the next (child) having ASD following the first' then there's an 81% chance the child won't have be autistic. Wouldn't a realist focus on how its more likely the child will be NT than autistic?
The people who tend to post on forums are the ones like you, who are feeling uncomfortable about something and are looking for support. Therefore, negative posts do tend to outweigh the good ones but there are positive experiences too. I had to fight for my diagnosis as most people, including medical professions, have a limited understanding of autism, especially when your able to live a normal life. Despite this, I've found government support, inc PIP and A2W easy to access.
Although you say you have no prejudices in you, that isn't how your posts come across. You do seem very focused on the way main stream society lives being the right way and that you have a lot of concern for those who don't live like this. For example, although you worry that your brother isolates himself, like me he might be happiest in the company of very limited people. When you describe your nephew you simply state that he's a young boy who is a late developer and is currently in his own world. Despite this you make a huge leap that he will always need care and will not be able to participate in mainstream education. That's only one, of hundreds of was, your nephews may live his life.I suggest you look into Paddy McGuinness's autistic children, his two youngest learnt how to manage their toilet needs later than most, had delayed speech, didn't have friends, plus they had a lot of challenges around change in routine and their sensory needs. However, they're both in mainstream school and are doing well.
https://www.manchestereveningnews.co.uk/news/showbiz-news/christine-paddy-mcguinness-autism-twins-14243515
https://www.dailymail.co.uk/tvshowbiz/article-6891177/Christine-McGuinness-delightedly-reveals-autistic-twins-making-friends-school.html
That is very helpful thank you, I worked in the nhs for many years and totally undertstand what you are saying here and the limitations it places on people. I've been worried that they will be missing widows for his speech and that professional help might be good. He is getting older now, but yes, I have read quite a few things now that have seen speech arrive around 8; however it unfolds, time will tell, we'll do what we can and what is needed.
If your nephew is being referred to a pediatrician and he’s working on different ways of communicating it sounds like his needs are being met and his parents are right in not wanting any additional help at this stage.
Applying for additional support, such as DLA or an EHCP can cause more harm than good as they focus on the medical model of disability (that there’s something wrong with the individual) rather than how main stream society disables the person, for exam0e through there expectations or the way they design environments
Thanks for your reply, yes this is helpful, I will take a read of these articles now - sound great. You make a good point that most people post on forums with problems, I have taken that onboard. I wouldn't say I am very focused on mainstream society in the slightest, I am using this as a measuring stick to try and communicate the difficulties and that is all. I home school my child who is NT, because I feel mainstream edcuation crushes the soul, an education to me draws out, helps a person find what they they are interested in, it does not decide what a person must learn.
At this stage I really dont think it makes any difference if the second born child is NT or has ASD, unless of course he is severely disabled, any second child will be difficult for them to manage. If he is NT the mother will not be able to meet his emotional needs and dad will need to compensate, in some ways having a book to work to is much better for her to follow, and we have found there are lots of these guides for autism to try.
Yes my nephew has a lovely life, away from mainstream life, it is isolated with very little variation but mostly he is happy and his parents love him dearly.
I will continue to try to encourage them to access support, it seems lacking on the ground but we will continue to try and look for things; they do not want state support at present, maybe this will change, but have now been referred to a piediatrician at last so maybe this will be the start. Thanks again.