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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

AiBU to feel sad about my son's autism?

66 replies

Whatisitallabout · 11/11/2017 08:15

He's going to be diagnosed soon, he's nearly 3 and is moderately/ severely affected.

I love my son more than anything. I'm just devastated life is going to be hard for him , and is already. I am aware there are lots of positives and it could be so much worse , but that doesn't mean I'm not hurting for him.

Thing is when I try to talk about the hard parts I'm met with "it could be worse" or "he will be ok" which are well meaning and lovely, but not always helpful when I'm trying to discuss my genuine fears for the future. It also makes me feel unreasonable for even breaching the subject!

OP posts:

Daffodils07 · 11/11/2017 11:33

Hi, my 10 and 16 year old have asd.
Its been a long hard road I wont lie, even with a diagnosis we get little to no help (10 year old has not been at school for a year).
Sometimes I find it hard to see a positive side to asd and when people tell me about famous people that have achived this that and the other I just want to slap.
I go on a forum with people with children with asd and adults who have also got asd which help a lot.
We do have good times and sometimes life can and still will be ok.
I did grieve and I think its very important to also address your feelings and obviously you are important to.💐

ILikTheBred · 11/11/2017 12:27

I second TED - I especially found ‘Love, no matter what’ very moving.

Original poster

Whatisitallabout · 11/11/2017 16:24

Thank you all. I'll definitely give it a whirl. Nothing to lose !

OP posts:

quiteascare · 11/11/2017 16:32

DS is 18 and he was diagnosed with autism aged 6. He gets a lot of support (he's at an autism special school and is on the highest rates of PIP) but he still has a lot of difficulties, which will continue throughout his life. I get annoyed with people who try to reassure you, because the fact is that life is very harsh for people who are disabled and are reliant on the government for support. DS has only a couple of GCSEs (at F/G grades) and some functional skills qualifications and can't cope with group situations or busy environments, yet we have had to deal with conversations about him moving into work.

Realistically he is going to be on ESA for a long time and his symptoms have changed over the years, but his anxiety has increased which is crippling for him. We will always be here to support him, but anyone reading forums for those with adult autism and for people dealing with disability benefits will know it's going to be very hard for him in the future.

Aeroflotgirl · 11/11/2017 16:39

I get you, my daughter 10 was diagnosed with Asd, learning difficulties, developmental delay 5 years ago and goes to a special.school. I still have times when I mourn for the neurorypucal child I didn't have. Milestones which they have missed, an uncertain future. Massive hugs💐💐💐

haveacupoftea · 11/11/2017 16:46

Yeah I get you. My DS has a disability which will change the future we thought we'd have. It's been difficult to come to terms with. But I either grow to become part of his world and enjoy it, or spend my life struggling and hating it. So I am trying to retrain my brain to want to be involved in that world.

I spend every minute of every day worrying about other people and their reactions to him when he is older. I worry that if he is bullied because of his disability it will break us both.

usernameinfinito · 11/11/2017 16:51

It is very hard OP. It is a process and everyone will experience it differently. Be kind to yourself. Give yourself some time.

Original poster

Whatisitallabout · 12/11/2017 14:04

Good view on it all , Thanks everyone, This post is so helpful.

OP posts:

dreamingofaname · 12/11/2017 15:54

Hi op, just saw your post today and it really resonated with me. My DS is 2.5 and being assessed for ASD. I struggle to talk to anyone as I don't want to be negative as that feels disloyal to my lovely boy (and all the awesome autistic adults I know) so I am super cheery which means everyone thinks it's no big deal to spend your weeks making therapy and doctor appointments and worrying about the future/EHCPs/ESA etc...

I have found a local online support group, mumsnet and portage to be great lifelines. Also giving myself permission to be sad about my son's communication struggles whilst being super happy that he is my son and proud of everything he achieves each day. Be gentle and kind to yourself and find the people you can be sad and happy with..

Animation86 · 12/11/2017 16:00

It's TOTALLY ok. My daughter had a large brain bleed at birth and we knew things would never be the same. I knew she had autism by 2 and when she was diagnosed at 4 it did hit me all over again. You are mum, you want the best they could ever have.

Notreallyarsed · 12/11/2017 16:03

All 3 of ours are diagnosed, and I’m halfway through the process to diagnosis myself (everyone is in agreement, just need to get it signed off). I understand what you mean OP, it’s not them that I wish were different, I just wish I could take away the hard parts or the confusing parts for them. I’m glad this thread has helped, it can feel like a bloody lonely road at times. I cried and cried when they told me DD was autistic, despite me being the one who flagged it up for both boys. I felt I’d failed her because I’d missed the signs I should have known so well.

Ttbb · 12/11/2017 16:04

YANBU. The way that people (individuality and in organisations like schools) treat people diagnosed with autism is terrible. You have every right to be upset for your son but I am sure that you won't let your sadness have a negative effect on your son. Good luck.

SandunesAndRainclouds · 12/11/2017 16:19

My daughter has various learning difficulties with autistic tendencies but not enough for an ASD diagnosis.

I've been through periods of feeling sad and very lost - I'm hitting one again now as it approaches the time to choose a high school for her. These 'normal' mile stones are huge and scary, much more so for my eldest NT child.

I think it's normal to feel sad about it.

Original poster

Whatisitallabout · 12/11/2017 20:10

Thank you all. It's so comforting to hear the experiences of others. I really do appreciate everyone taking the time to share their experiences and words of wisdom. I'm only at the start of this long road ahead.

OP posts:

backinthatdress · 12/11/2017 20:20

Op - your son sounds a lot like my son. He was diagnosed 2 yrs and 10 days ago... everyone says 'he will be ok' and he will be ok for aslong as I live because I will make sure of it but that doesnt make it any easier about the fact my son may never move out of my house, get a job, have a gf or even talk properly!

Everyone thinks saying things like 'but he has two parents that love him' yes he does but that doesn't make it any better!

People are just trying to be nice, they don't know what to say.

My son is amazing and I love him so much, he's 4 and still my baby!! But he's moderate to severe, has 0 social skills and doesnt really speak. Few words here and there, that's it.

backinthatdress · 12/11/2017 20:22

I still get sad about it but on the surface people wouldn't really know, it's only if I have to talk in depth about it that I cry now! Your saddens will improve

gingerh4ir · 12/11/2017 20:28

it's fine to feel upset about it. Life will be harder in many ways - for him, for you and for your whole family. I have a severely affected DD and I don't wanna lie - it has been tough. Financially it is shit (I had to leave a well paid job to go down on carers allowance). Friends dissapered. the pressure ruined my marriage and the mental health of DC2 is badly affected...

But I have also made new friends along the way, I am surprised by my resilience and live does go on.

make sure you have a good support network lined up and look after yourself too. it's going to be ok. somehow.

whirlygirly · 12/11/2017 20:35

Oh just reading this has made me ache for you - I remember well how bloody hard the early days were. It is the most terrifying thing I've ever been through.

Since then, ds has made unbelievable progress, functions in mainstream school in a way I couldn't have imagined, and went from non verbal to non stop.

Be very kind to yourself - things will get easier to cope with.

Original poster

Whatisitallabout · 12/11/2017 20:37

Thanks for your honesty, ginger

backinthatdress It sounds like our wee ones are very similar. So hard to accept the life ahead for my boy, but if he is happy then so am i

OP posts:

asdad · 13/11/2017 12:04

Its not all bad. If you can find out what they are good at, things like this can be done...forums.sailinganarchy.com/index.php?/topic/104253-i-built-a-boat-now-i-need-to-make-rigging/

justinelibertine · 13/11/2017 14:28

I know OP. DD is 2.8 and has her ADOS on Thursday. I am hoping for a miracle or that she may not be but the truth is that she is somewhere on the spectrum and I have 'known' in myself since she was 14 months.
However, she is making progress. PPs have mentioned how much those tiny milestones mean. I could have cried with joy this afternoon when I was taking her to preschool. She stopped outside having seen another pupil, walked back to them and said hello (name of child). It means so much that she did that. She has speech delay and social interraction difficulties. It is such hard work but we will get there.

The isolation is hard. I was bursting to tell someone and had no one who would get it.

Original poster

Whatisitallabout · 15/11/2017 13:42

Justine, that's so lovely to read. I get it ! :) share with us.

OP posts:

Bagel88 · 15/11/2017 13:56

Why the sadness?

Autistic people can be great assets to their family and society. Whilst it wasn't diagnosed easily in the past, it's claimed that Mozart, Einstein, Darwin and even Michelangelo were on the ASD spectrum.

Yes, we've had very hard days since our daughter was diagnosed, but on the flip side she learnt the periodic table at age 6, designed a mobile phone app at 14 and is currently in her first year at one of the world's top University's reading Mathematics.

Notreallyarsed · 15/11/2017 14:05

Bagel88

My kids are bloody brilliant (obviously I’m biased I’m their Mammy) and I wouldn’t change a thing about them. But it does hurt me when they struggle, when they are bullied and when they are confused and overwhelmed. It’s not one or the other, there can be great pride and joy alongside sadness.

gingerh4ir · 15/11/2017 14:08

you realise that the majority of the autistic population has also learning difficulties??

my daughter will need lifelong 24/7 care and this is the case for many others affected. They could not be more different from the geniuses in the lines of Einstein or Mozart. Such comments are just so useless and have nothing to do with the reality of life for this on and caring for at the severe end of the spectrum.

great that your DD us doing so well but this is very much the exception to the norm.

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