Emotional side of having ASD child

[Judes64]

Hi there. So I have a 4yo DS who hasn’t been diagnosed yet but is on the pathway for an asd diagnosis (and adhd too) He is non verbal, doesn’t understand simple instructions and has an ehcp at school.

Life is extremely difficult with him although I love him to bits of course! Generally I am ok, but sometimes I have moments where I just cry.

I took him trick or treating last night and he wasn’t interested in the slightest. He wouldn’t wear his costume either. I am absolutely fine with this, if he doesn’t want to do those things then that is up to him but it does make me ‘grieve’ (if that’s the right word) for a child I thought I would have.

Last night I was scrolling through TikTok and saw a reel of a asd teenager. It was his birthday and he was opening presents and it really made me smile. The next minute though I am crying and thinking about DS.

I feel like I am waffling on and I don’t really know the point of the thread, I guess I just want to let things off my chest. Life just doesn’t seem fair at the moment and I just want my beautiful boy to be happy and the thought of me never knowing what he feels makes me sad.

Thank you if you have read this far

Your little boy can be happy and experience great joy - it might not look the same as what makes others happy though, and that's what you need to get used to.

It does take an adjustment on the parent's part though, and that can be hard on you for a bit, especially if you had specific visions of what having a child would be like.

Good luck to you both in finding the joy!

The SEN board might be a good place for you to get some support - lots of experienced understanding parents over there.

Thank you x

Oh I have been there and it's heartbreaking. Every special occasion every milestone that they miss can be another pain. I grieved hugely for my little girl and selfishly for myself and our family too.

It's funny the things that hit the hardest, my oldest plays a team sport so I follow them on Instagram. It's absolutely kills me seeing the age group my dd should have been in on it .

The tears are easy come at the times you don't expect them.

My only advice would be one day at a time, try not to think about the future too much. My dd has amazed me in ways I never thought possible and her achievements are so sweet. Acceptance will come as he grows.

Just mind yourself.

I understand you completely OP we are in very similar positions.

We didn’t go trick or treating last night because DC would not have enjoyed it, seeing friends out with their children all dressed up I did also feel sad, but what I have realised is that I’m sad because they are the types of things I imagined I’d be doing with my child, but actually my child is as happy as larry!

Its okay to grieve what could have been I do and probably will in the future, but knowing that my child is actually really happy and they don’t actually care about Halloween/Parties etc makes me feel better, if that makes sense?

sending love it is a tough road, but you’re doing great I really do empathise x

Thinking your child won’t experience life’s pleasures is a fundamental misunderstanding of ASD. Autistic joy is real and beautiful.

I understand… am 22 years along on this journey and even though the grieving isn’t as strong or as all encompassing as it was when my DS was little it still comes and bites me on the rear occasionally. My DS is also classed as level 3 autism. There are moments of true beauty and joy, embrace those as much as you can. Good luck and know that you are not alone.

Another one that completely understands. It does get easier but it takes time. At the moment you’re also still wondering what life is going to look like as well as coming to terms with the diagnosis.

Hearing about other people’s children reaching milestones used to feel like a gut punch but I have come to terms with most things now. I can’t lie and say that our lives aren’t more complex than others with offspring the same age (21 & 24) and that there isn’t significant overheads with continuing to care for them but I mostly feel a sense of acceptance.

"Your little boy can be happy and experience great joy - it might not look the same as what makes others happy though, and that's what you need to get used to."

I agree. My son can experience great joy and when he does it shines out of him.

My.son is AuDHD

He sees the world differently and experiences joy in things that he enjoys. He hates parties and the idea of going trick or treating tk other houses yet adores handing out sweets to those that come to us

He will find joy in his own way

I have a family member - not my child - who is 5, autistic and non-verbal. They don't like dressing up. But there's lots of stuff they do love, the seashore, running and exploring, a favourite cartoon character, anything with wheels. For me, it's been a learning curve, finding out how to read him and communicate with him. He uses PECS. But a lot of the time he is just as happy - happier even - than a more typical child.

Not verbal at 4 doesn’t mean he will always be non verbal. He may very well start speaking later on and if not there are other ways to communicate that can be learned. But does life look different. Yes it does and I understand that it can be a form of grieving for the child you thought you would have. That’s normal and ok to feel like that. Comparison is hard, try not to look at all the social media posts of his peers. Someone earlier said it perfectly. Live for today. You’ve no idea what tomorrow will look like and he will bring you joy in his achievements as well as his personality. But it’s hard to have a child with additional needs so be kind and gentle on yourself and feel your feelings and then know that the future will have good times and while it might look different to what you expected it will become easier but let go of the trying to imagine the future because it’s just unknown right now but I guarantee you’ll feel better as time goes on and you won’t feel like this always.

It gets you when you least expect it @Judes64

My son last night wanted to go into people's houses and became quite upset when he couldn't. When people would have a bowl of sweets he would say "no this one" and point to what he wanted, but you could see some thought he was being rude. I have to hold his hand when we are our at all times, he elopes and has no concept of danger.

I definitely grieve the life I thought we would have. Everything is just harder and more emotionally draining. Doesn't mean you love them any less, but it's hard. Sending a hug. I get it.

Thanks everyone I guess I just need to get used to all these little things.

I don’t even know why but when I’m having one of my moments and I look at him I just feel like crying.

He is such a happy and smiley boy who seems to love life so I need to hang onto that. I just hope he knows how much I love him

Totally get what you mean, its so hard sometimes. It is a type of grief- for the life you thought you would have, the family you thought you were building.
I have 3yo twins both in process of being diagnosed and every day is a battle. Especially for my older DD (6) whose path has also changed irrevocably because of the challenges.
All you can do is your best for them, but it is ok to feel sad, it is ok to compare and it is ok to feel frustrated. Just don't let those be the overriding emotions. There is also a lot of joy, its just a mindset thing sometimes. Hugs for us all going through it ❤️

I get it … I’m in the cyclone of professionals to see if my daughter is potentially ASD or just delayed in her development… and it’s the emotional exhaustion that gets me…. It is your own trauma trying to deal with this and feeling like you aren’t allowed to show it… it’s hard seeing other kids their age , watching kids have birthday parties play independently in a playground and not feel the twinge of sadness ….

What really gets me is the poor you face other parents make - I know the mean well but the poor you / oh it must be tough face gets to me …. Let alone the non stop repetitive questions from medical professionals….. it’s draining but we wake up slap on a smile to fight for that innocent little person who needs us to be their security guard and cheerleader all at the same time….

It’s really tough so don’t feel bad your not alone

Thank you this explains it beautifully. I know he’s happy and that he loves me (he’s always giving me cuddles and wants me) but it still doesn’t take away the wonder of “what if” It’s so incredibly tough in so many ways.

I have a 9yo DS too so maybe that’s why I am noticing things more. We just want the best for our kids and somehow I feel like I am failing even though I do everything for him and always will. Thank you for your comment it explains it really well xx

Sending hugs to you my love - it's hard and you are still coming to terms with things. My son is 32 now and there have been times of great joy and great difficulty. My advice would be to take each day at a time and try not to project your worries to the years ahead. A lot can and will change over the years. If you can join a local support group for parents it can really help - being with other parents who really understand and don't judge.

I hear you OP, it is a form of grief and it is really hard at times. My eldest is 7 and has ASD - I've found myself staying off social media (I'm not on insta at all an minimally on fb) because our family moments generally don't look much like other people's!

I agree with others saying you have no idea what the future will hold, for me DS is so different now from how he was at 4. Try and enjoy the moments that bring him pure joy, even if they seem nothing like what other families do.

Last year I asked DS what he wanted for Christmas and he said 'a Christmas tree'. He's not bothered about presents but he loves the decorations, especially lights.

Going through the exact same at the moment. There was a class party not long ago and DS didn’t get invited. I didn’t expect him to but it still stings.

It really is draining. I wake up most mornings feeling like I can’t face the world but I know this little person needs me❤️

Thank you for not making me feel bad. I feel like we have an expectation of being ok all of the time and sadly that’s not always the case x

That you. I try to take things one day at a time but life has a funny way of throwing things at you😢 I have always said I wish I could see into the future so I can be prepared etc but obviously I know this isn’t possible.

Thank you for your support x

I can totally relate and it's not fair and it's not what any parent was dreaming of when they first realised a new life was coming along but you will adapt in time. The older years are much easier as you do learn to avoid comparisons. The set events of childhood are the hardest and you should not put pressure on yourself to not feel sad when it's a healthy and normal emotion to feel . Do you have SN parent friends locally who can support you and help you talk through these complex emotions ?

If you're not autistic yourself, the things that make sense to you and that make sense to him will sometimes be very different. I think it's natural for you to want him to have the opportunity to do the same things as you - or the things you wish you could have done. This instinct comes from wanting the best for him. The hard thing is in reframing that what brings you happiness and what brings him happiness aren't necessarily the same, and that's OK.

Everyone finds it easier to relate to people who are most similar to them, so if it takes you longer to understand what something means to him and why it does, don't beat yourself up about it. It's harder for him to explain - both because of his age and because of his health - so you're really doing all the heavy lifting to communicate well with him. That's love. It both makes you a good parent, and it also justifies feeling sad sometimes, because it is hard work.

Parenting doesn't have to feel easy for it to be good parenting. In fact, sometimes when it feels hard as hell is when you're really doing an excellent job.

How he expresses himself may be different, but you can bet on some level that he knows you are a safe and trusted person, and someone he wants to be around the most. Neurodivergent children are always the worst with their closest and most loved people, as they know they don't have to try to deny who they are. Holding in all the 'bad' behaviour can sometimes means it overshadows the 'good' behaviour at home.

When he gets to a point in his life where he gets that acceptance outside of home as well as at home, you should hopefully see things level off a bit, and you will get to experience more of him at 'his best', as he won't be instinctively trying to separate out himself into two people anymore.

You can enjoy being a parent and you can love your child more than anything or anyone else in the world... and you can still have a bad day. It doesn't change anything. He's lucky to have you. You're lucky to have him. But that doesn't mean every day is unicorns and rainbows.

Oh I totally understand. I have a 4yo with ASD (non verbal, still in nappies, sensory processing issues etc). And it’s so so hard, it was his birthday the other day and at 4, he still doesn’t understand the concept of opening presents. In fact I don’t think he even understands it was his birthday at all. Every year, we’d say “next year he’ll understand” but he doesn’t, a small example of our challenge, but it breaks my heart every time. The comparisons with other children are really tough too, it is a lonely place.

But seeing his joy radiate out him when he finds something he loves just makes me so incredibly happy. I’m so proud of him, he’s doing things at his own pace and every tiny milestone we hit is a huge achievement.