DS diagnosed with autism

[Millsa]

Firstly I’ll apologise in advance if I offend or sound ignorant, I’m just new to all of this and what I’m writing is coming from the heart. I have had my suspicions for a while now, but there was a part of me that thought maybe I was over thinking it. So while it’s not a huge surprise, it’s still come as a shock.

If I’m being honest, I’m completely devastated and have done nothing but cry. I am trying to snap out of it, but I can’t at the moment. I am scared for the future, for him and for me. I look at him and get upset as it’s just not fair. I have a million questions, but no answers. He is non verbal, and it’s breaking my heart not knowing if I’ll ever hear his voice. I know he’s not going to experience life like DS1 and I feel so guilty. He is a happy boy, he really is, and so gorgeous. Life is hard with him, but I’ll never give up. It’s just not something you think will happen to you even though it’s very common.

Sorry if I’m rambling, I just need to let it all out and maybe speak to other parents who have/are going through the same

Perhaps have a Google and see if there are any parent support groups locally. There's a wonderful one near us that groups for parents and siblings as well as support and services for autistic children.

I'm guessing that he isn't school age yet. When he is you will also find more support for both your DS and yourself.

It may be challenging but hopefully you will find your feet.

How old is he? Dd acquired speech just before her 4th birthday, she is still selectively mute but oddly is a semi professional singer ... go figure that one! Autism is an incredibly wide spectrum and assuming your little one is young, it can be hard to predict how they will be affected, we were told to prepare ourselves but she exceeded expectations, i want to give you realistic hope, won't be plain sailing but keep it in mind that autism is a wide diagnosis

It’s understandable to be upset. You’re grieving for the life you wanted for your child.

You don’t say how old they are, but I guess a youngster if they’ve only just been diagnosed but are non verbal?

Your life will be different but it can also be so much more rewarding. Every tiny milestone will make you proud. You should get lots of support if you’ve just started the early pathway.

They are parent/carer support groups if you need to talk or ask questions.

Thanks for all the replies. He is 3. Before the diagnosis, I read lots of threads where people said they didn’t get a diagnosis for years, so with him only being 3 I didn’t expect it to happen so soon. But maybe that’s a good thing

I've been there and I grieved so much, I eventually paid for on-going counselling, so I could voice my fears and sadness, away from people trying to cheer me up or offer advice.

The only thing you need to do now is accept your ds has autism and it will affect his life and his family's life, for the rest of your lives. You cannot change him, you can only roll with it.

It took me five years (sorry but I want to be honest) to accept that autism had happened to my son. I grieved for the child I thought I had and was absolutely terrified.

Fast forward to today and ds is 13, verbal (all the swears and outrageous sentences a speciality) and absolutely wonderful.

He makes me laugh every single day and I love the bones of him. I now can't imagine him without autism and would have missed out on so many experiences without him.

He's made me a stronger, better person. He is a gift.

You'll get there - hold fast.

@nobodysdaughternow The second part of your post made me smile. I think it’s going to take me a long time to accept it, I won’t lie. All the ways I imagined life would be like when he was born have been ripped away but I hope one day I am able to have your outlook. It’s just tough and can’t really put into words how I’m exactly feeling. I think what sticks in my throat is all the experiences I had with DS1, birthdays, Christmas etc seeing how excited he was and how much he understood, DS won’t experience any of that, he doesn’t understand a thing. I don’t know if that makes sense, I’m just having all these thoughts and feelings going around my head

It's completely normal to be grieving for the loss of the DC you thought you had, and the loss of the 'future' you thought he would have, and how his life may be different to your other DC's.
It's always a shock to be told that your worst fears are correct, however much you with they weren't.

Only those parents who have been through this really understand. I had lots of people (well meaningly) say 'but they're still your DC so nothing's changed', when it HAD changed, because I had 'lost' my 'normal' DC, and had to accept that MY DC would have a harder life, which broke my heart.

But you do eventually come to terms with the 'loss' if you get what I mean ? but you are 100% normal to be grieving right now.

My autistic DD has just got a BA at uni, and is going into her honors year in Sep, and I couldn't be prouder ! But she had LOTS of problems/issues at school which had to be overcome, and still struggles with friendships/social things, and always will.

Whenever you're feeling 'overwhelmed', just try and think to yourself 'I'll tackle my worries like I tackle my meals, ONE at a time !'

It's perfectly normal and allowed to feel the feelings you have. Allow yourself to feel them. As others have said you are grieving the life you planned with DS. Probably the best resource you can access is other parents in the same boat.

You might always have wobbles going forward but it doesn't mean you live DS any less. Over time your outlook will change and you'll likely find yourself 'celebrating' very different things than you did with your other DS but the feelings of pride, joy and love will be no different. Thanks not to.minimise the difficulties but accept a change of perspective.

All the best for you and your family x