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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU for how i feel about my sons autism.

202 replies

saffkey1 · 30/12/2018 12:12

My DS is 5 and is severely autistic.I have two younger children with my DH.AIBU to not,as everyone else suggests i should,be really ott positive about my child being autistic .I have tried,but I find alot of people say shitty things like ‘i wouldnt change a thing’ when i really would.I love my son dearly and i will support him until i die but if i could give him a tablet i would.I just worry so much about him,about his life being hard.I also get incredibly jealous of those with ‘normal’ 5 year olds who complain about them.Im not sure whether im being awful for feeling this way.

OP posts:
Debfronut · 30/12/2018 13:14

Saffkey1 you have the right to not be positive. As a mum of two boys with autism now 16 and 26 I wish all the time they were normal. I love them to bits but I want a normal life for them and myself. Its draining, hard and will never end. I am old enough now to tell people to jog on if they tell me it could be worse etc.

Aeroflotgirl · 30/12/2018 13:15

danni0509 you see the people in the media with the more desirable Autism, those who are high functioning, and who are able to 'talk about their experiences', dd cannot do this, she is totally on a different wavelength, but even her Autism is not as severe as some others that I know about, I feel that I am one of the lucky ones. My neighbour as an adopted dd who is 23 has Autism, learning disabilities, epilepsy, and behavioural issues who is in a group home and needs 24 hour care. She hits and bites and swears at her mum (my neighbour) and her carers. Though she is an adult, she has the mental age of a 5 year old and will never be independent.

This and others who are in a similar position are some who form the more unpaletable side of Autism, the Autism that the media does not talk about. Another friend of mine, has not slept properly in years, her ds11 poo smears, and does not sleep at night, meaning he poo smears at night and she was to clean that up when she needs to be asleep, he has severe learning difficulties and behavioural issues, he may never have an independent life, because he has a genetic condition as well, it will only get worse.

sizzledrizz · 30/12/2018 13:15

YANBU. Life is very tough with kids with ASD. My eldest is high functioning and has a comorbid of ADHD and at 15 can not walk to school due to his high anxiety levels, the school is 10 minutes walk away and I have to drive him there. My other two are lower functioning and never sleep. So therefore I never sleep. I'm not half the parent I want to be because I'm permanently exhausted.
My eldest wants to go to university to do maths, I don't know how he will considering this will mean he has to travel by tube. It makes me feel desperate that such a bright future could be his, if only

WidoWanky · 30/12/2018 13:15

I like your husband's view. Fuck 'em.

I have 2 high functioning bundles of hell. Life is shit. I really, really cannot give any time or energy to anyone elses hurtful, thoughless or deliberately unkind opinion.

So yeah. Fuck 'em.

HidDis · 30/12/2018 13:15

Hey;

You're not unreasonable at all.

I have HFA and if I could take a pill, not gonna lie, I would.

Flowers
x2boys · 30/12/2018 13:16

I also have a son with severe autism and learning disabilities and whilst I love him to bits of course life life's a struggle I got irrationally angry on Facebook when someone said everyone with autism is very clever and it is 100% not a disabillityHmm

aprilanne · 30/12/2018 13:17

my son has hfa he has no real academic difficulties but has no school qualifications because i had to home educate him because there was nothing suitable in our area.he just ran away everyday from the local primary at age 8 they said they could no longer cope they wanted to send him about 100 miles away to a special boarding school .no bloody way so we just did the best we could .He is now working with a great firm who support his quirky nature but he has no real friends doesnt get other people .life is hard and he will probably stay at home with us a lot longer than his peers.i love him dearly but his autism affected every bit of our family life .he could not cope with change of any kind holidays were a nightmare .it affected his two older brothers as well .all i got was he is high functioning he will be fine .but our life was and is hard .some days i just wish he was normal

Ted27 · 30/12/2018 13:18

My son falls more towards the 'quirky' end of autism. For the most part he pootles along ok in mainstream society, but there are some things which make him vulnerable and I do worry about his future.
Would I change him ? Hard to say. He is adopted so to say I would change him almost feels like a rejection of a child I actively chose.
But of course I hate to see him struggle with things and wish he didn't have those extra obstacles to overcome.
For me the being positive thing stems from wanting him to be positive about himself, not to feel that he is a lesser person, less equal, less worthy, because he is different, not because I want to wave a flag, jumo up and down and shout that Autistic or any other disability, is a fabulous thing to be. Its about acceptance.
I think Autism has become a bit of a trendy thing. So many celebrities declared themselves austistic at one point that it seemed to be fashionable. Maybe some of them are, maybe some are just a bit eccentric. But I don't think it helped the vast majority of families with autistic children or adults.
Its not acceptable for anyone, child or adult, to be pointed at or talked about because of their disability, you have every right to be upset about that or want your child to be subjected to that behaviour. It shows how far we have to go with acceptance of disablity.
Now I would probably have had a word with them but probably not when I was a newer parent and less confident.
I want my son to be accepted for who he is, not discriminated against for what he is not, so being positive about who he is, is part of that

sizzledrizz · 30/12/2018 13:22

I'm actually thinking of hiring someone to be ds1's friend.

Original poster
saffkey1 · 30/12/2018 13:24

Oh @sizzledrizz thats made me sad!This is one of ny worries for my DS1,that he will have no friends.
Yes the media’s ‘positive spin’ really winds me up.

OP posts:
SprusselBrout · 30/12/2018 13:26

The thing is, anyone who says "autism is just quirky blah blah" probably doesn't know very much about it. All autistic people struggle with one thing or another, but some can "mask" their difficulties to a greater degree than others. The idea that there is "severe autism" and "mild quirky autism" is wrong.

zzzzz · 30/12/2018 13:26

This reply has been deleted

Message withdrawn at poster's request.

BaronessBlonde · 30/12/2018 13:26

Having a child with (high functioning) ASD, I empathise, OP.
I would love to wave a magic wand and wish it away.
Like a previous poster ^, I have developed a rhino hide, though. Mentally, I picture a castellated wall around us (my little family and me) and the looks/words/sniggers/judgements bounce off the walls and don't hit us.

Works for me.

On another point, I think the "visibility" of ASD is wonderful on one hand, but on the other, it disadvantages families who have a non-verbal child who has ASD; where their severe sensory and language difficulties result in banging their heads on walls etc.
A little bit of tolerance goes a long way, if you are an onlooker.

x2boys · 30/12/2018 13:26

My son has a friend he's non verbal and goes to a special school himself and another non verbal boy keep seeking each other out and playing next to each other which is rather lovely!

SprusselBrout · 30/12/2018 13:27

I have to say I must've missed any positive spin on autism in the press. It's either very simplistic, outdated information, or straight-up fearmongering

hipposarerad · 30/12/2018 13:27

YANBU. Both my dc are diagnosed with autism. Dc2 is labelled 'high functioning' but I think the functioning labels are a crock of shit. My so-called high functioning child is on a part time timetable in a school with a dedicated autism unit. He still, even when surrounded by a highly skilled and experienced staff team ratio of 3-1, has behaviour which is so challenging as to be unmanageable. He still gets excluded every now and then. He soils his pants pretty much daily because he either can't feel what's happening or won't leave an activity to go to the toilet. Most of my attempts to parent him are met with him saying 'you hate me, everyone hates me'. He will quite likely commit suicide one day, I hope he waits until after I've died.

So yeah. Positivity is all well and good, but it would help to be able to acknowledge the disabling aspects that many autistic people and their families face.

danni0509 · 30/12/2018 13:27

@Aeroflotgirl my ds is on the severer end of the spectrum and sounds similar to how you describe your dd, unable to talk about own experiences etc, he is oblivious! But he could be much much worse. So I often think we were lucky we got the autism we did, sounds weird to say that but you know what I mean.

Original poster
saffkey1 · 30/12/2018 13:28

@danni0509 I cannot believe your friend did that.

OP posts:
Original poster
saffkey1 · 30/12/2018 13:30

Another thing that annoys me is when people say 'at least he can walk' or 'so he doesn't talk its ok' its not ok,comparing to other struggles doesn't make yours ok.
I need to develop @Ouryve 'Rhino hide'

OP posts:
Original poster
saffkey1 · 30/12/2018 13:30

Yes @Ellie56 really,its crazy

OP posts:
immortalmarble · 30/12/2018 13:30

Not remotely positive about my (HF) sons autism.

It’s ruined his life.

Original poster
saffkey1 · 30/12/2018 13:32

Yes @zzzzz the smearing,the behaviour,the not being able to express himself.Devastating

OP posts:
Aeroflotgirl · 30/12/2018 13:32

sizzledrizz sounds like dd 11, she has HFA, is quite intelligent and can speak really well, but her anxiety really inhibits her independence and ability to use her initiative. She is in a special school, as it would be too much for her to cope with, and she would be extremely vulnerable as she could not defend herself and would probably be the target for bullies. Dh and I bought her a Keno build your own computer for Christmas which she did by herself with dh (who is also Aspergers and computer programmer) supervising, he is teaching her to write code and programme games and stories for it, dd is really enjoying it and has taken to it like a duck to water. I hope that it will become a career for her later on.

TornFromTheInside · 30/12/2018 13:32

You're being honest - and I think it's a healthy thing.
Not only that, there will be other parents with similar situations who will find your honesty refreshing and supportive (because it will help them realise they are not alone in having such thoughts).

People are full of platitudes (usually with the best intentions), but they count for next to nothing. Sometimes, when bad things happen, it's not fair, it's utterly shit, and it doesn't happen 'for a reason' - it just happens.

That doesn't change your love. It just means you don't have to like the circumstances.

Paradoxically, I think this honesty about a negative situation is a positive outlook. It's accepting the reality that things are hard, and you would change them if you could, but you can't and you get on with it. To me, that's far better than ignoring the elephant in the room.

SprusselBrout · 30/12/2018 13:33

The thing about wishing away/wanting to cure autism is that most autistic people consider ourselves to "be autistic" rather than "have autism". It's not a condition, or a pathology, it's our neurotype. Many of us are of the view that you could not wipe out autism without also wiping away our personhood. Of course I would want people who are eg nonverbal to have an easier time communicating but that needn't involve wishing they weren't autistic