Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
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:
Merryoldgoat · 30/12/2018 12:46

YANBU

My son has HFA and like PP says, most think he’s quirky and singular but there are significant issues we deal with and I wish them away lots.

Managing more profound difficulties must be an absolute slog and wishing it away it entirely understandable.

Ouryve · 30/12/2018 12:46

I tend to stare back at starers and either tell them to keep on staring or ask them if I can help them.

I loved There She Goes when that was on TV because it was an actual acknowledgement that this is life for many families. Even DS1 enjoyed it and was a little kinder to his brother for fleeting moments after watching it.

Propertywoe · 30/12/2018 12:46

My life became easier when I viewed my son as a child with severe learning difficulties. I no longer use the term autism as it does not have enough information for the other person to understand and leads to unwanted conversations.

Original poster
saffkey1 · 30/12/2018 12:47

He was once again pointed at by a family who were ckearky talking about him.
I have voiced this to my mother and DH but they just try to be positive.

OP posts:
Spieluhr · 30/12/2018 12:49

No one has a right to not feel upset by an idea. Also being upset isn't necessarily a negative thing. It's good to be challenged, Why shouldn't people be allowed to express their honest feelings? This is why I feel shut out out of the autistic community in some respects. There's this bizarre idea of many forums that you always have to be positive about your autism, well quite frankly, fuck that! Those of us who hate having autism need and deserve support just as much as those who feel comfortable in their own skin.

Forcing people to pretend that everything is wonderful when you're autistic is incredibly harmful and stifling. People with autism and also the people who love them need space to be honest and to be heard.

NopeNi · 30/12/2018 12:51

Of course it's okay for you to feel that way, why wouldn't you? It's not the same as not loving someone, just wishing that life was easier.

I'm diagnosed as autistic ("higher functioning" in many ways of course), and there are times when I'd cheerfully swallow the pill too. Well, the liquid version as I can't bear pills or anything weird in my throat of course.

I fucking hate it beyond belief at times. Who wouldn't want to be normal and be able to deal with the world and people better?

Sorry it's so tough for you Thanks

feelingverylazytoday · 30/12/2018 12:53

Completely agree with you, OP. My daughter has severe autism with learning difficulties, life is hell sometimes. I wish I could be optimistic but I can't.

RebelWitchFace · 30/12/2018 12:53

I work with kids. Some of them have SEN .
There are some of them that even I lay awake at night worrying about them and how will they cope in later years. For some of them it's obvious already that they won't be able to live an independent life.
I only see them 6 hours a day and still worry. Why wouldn't their parents?

Original poster
saffkey1 · 30/12/2018 12:54

Its really refreshing to read the views of autistic adults.

OP posts:
Sirzy · 30/12/2018 12:54

There are many of ds traits that I love and that make him who he is

There are also many of them that disable him to the point he can hardly leave the house. I would question anyone who wouldn’t change things like that if they could

Sloegin2 · 30/12/2018 12:58

YANBU.
My 12 year old son is severely autistic/learning difficulties/ADHD.
I love him to bits and would never be without him. Would I take the extreme anxiety and difficult life from him? Yes, in a heartbeat. We have had grown men come up and shout at him/us because his behaviours offend them so much. I’m terrified for the future, frankly.

Aeroflotgirl · 30/12/2018 12:58

As a parent of a dd11 with ASD, learning difficulties, sensory processing disorder, and high anxiety, I totally agree. If I could give her a pill to take away all of these things, that she can live her life like her peers do than I would in a heartbeat. Her anxiety cripples her, she is capable of so much more and is so intelligent, but that really inhibits her independence and learning, and her body is in constant fight or flight mode, which must be really awful for her. She has to be medicated to go to sleep, or she will still be up in the wee hours of the morning.

I think the media has put a positive spin on Autism, you see people like Ann Heggerty, Chris Packham, Dan Akroyd who has Autism, but you don't see the ones who are severe, who need 24 hour care, those who have the body of an adult and the mind of a toddler. The unsavoury side of Autism that is kept in the dark.

Italiangreyhound · 30/12/2018 12:58

YANBU, my dd is on the spectrum, high functioning. Her life would be so much easier if she did not have, what was once called, Asperger's.

I am a firm believer in being positive but that doesn't mean we need to lie to ourselves about how we feel.

I know someone whose child is in a wheel chair, she is falling over herself to minimize the disability and I am torn between thinking the child is lucky having such a positive parent but also feeling that maybe a more realistic approach would be helpful. Her child is very bright and by now will be forming their own opinions on life. Having an overly optimistic parent can sometimes be hampering to saying how you feel.

For you OP seek out support from other parents who are similar o you, there are support groups on line and sometimes face to face. No one who has not walked in your shoes gets to have an opinion (that you need to listen to) and even then you are free to agree. I do wish there was more research into autism and how to make the lives of autistic people, and their families, better. Thanks

pineapplebryanbrown · 30/12/2018 12:59

This reply has been deleted

Message withdrawn at poster's request.

Sirzy · 30/12/2018 13:02

I got really annoyed at a lot of the Anne heggerty coberage from the jungle because it seemed to imply because she could everyone with autism could

pineapplebryanbrown · 30/12/2018 13:03

Very true what has been said upthread - the palatable media friendly side of autism ie knowing a lot on certain subjects Chris Packham is just the tip of the iceberg.

It's a better way forward though that at least autism is part of the conversation and we may as well lure the public into it with the palatable bits first.

danni0509 · 30/12/2018 13:03

I think the media has put a positive spin on Autism, you see people like Ann Heggerty, Chris Packham, Dan Akroyd who has Autism, but you don't see the ones who are severe, who need 24 hour care, those who have the body of an adult and the mind of a toddler. The unsavoury side of Autism that is kept in the dark.

This 100 times over.

When I'm a celeb was on, my friend rang me and said about Ann. She then made a joke about ds being on the chase when he was older.

I had to explain my sons autism was just a bit a fucking lot different to Anns!

Aeroflotgirl · 30/12/2018 13:05

My dd 11 goes to a special school which is awsome, and she has come on so much with her learning, behaviour and independence. Just for one moment, I want her walk to the local mainstream school with her friends (she would be in Yr7 and be 12 soon) and not have to get the LEA transport to SS. To be able to enjoy the type of life that other children her age enjoy, independence, friends, normal schooling.

onefootinthegrave · 30/12/2018 13:07

Sirzy I agree.And it's absolutely not the case! My DS (now 19) is high functioning but also diagonsed with anxiety and pure OCD. He also has a stammer. If I could take away everything that makes him vulnerable, suicidal and wanting to self harm I would without hesitating.

OP, you're not alone. It's so hard isn't it. I lay awake at night worrying about what will happen when I die (his dad disappeared after hearing I was pregnant, my family is small). And my anxiety has rocketed as a result. It is a disability and it really pisses me off when people minimise it.

Italiangreyhound · 30/12/2018 13:07

danni0509 Thanks

Biologifemini · 30/12/2018 13:08

I agree the terminology is tricky. The media friendly view is of people with autism who live great lives independently.
But who is speaking up for the people with moderate to severe autism who cannot live independently?
This group is largely ignored.
I personally think that moderate-severe autism should be called something different (no idea what though) as it causes so much confusion.

IhateBoswell · 30/12/2018 13:11

YANBU. Absolutely I’d wave a magic wand if I could and take the autism away from my 4 year old. He is more like a 2 year old, and is lovely and affectionate but he’s also the size of children almost 2 years bigger.

NopeNi · 30/12/2018 13:11

I agree the media tries to put a good spin on it. I'd argue that even when they show "higher functioning" people, they don't really show the dark side for them, the sheer effort it must take to appear "normal-ish" like that, the decompression afterwards, the meltdowns they must have, or the sensory or social issues. They just seem to be quirky or have superpowers. I guess it's a fine line between trying to empower people and between patronising them?

One of the more consistent and sympathetic portrayals I've seen of Asperger's level of autism is Abed in the comedy Community.

I think it was the BBC who did The A Word, focusing on a non-verbal autistic child, and that had huge issues too, but tried.

Ellie56 · 30/12/2018 13:12

Not a week goes by that I dont have somebody stare at him or point.

Really, some people are so rude! So stare back, point at them and say, "My son has autism, what's your problem?"

And you are not awful. It is hard work being the parent of a child with autism, and yes, I've often wished things could be different, and wondered sometimes what our lives would be like if we had only had two children instead of three. We certainly wouldn't have spent our retirement battling with the local authority to get our son what he needs and is entitled to!

Branleuse · 30/12/2018 13:13

All my family are autistic, although most of us are the aspergers type side of it, and theres a lot of things that I wish were easier for all of us, but the problem with autism, is its not a seperate part, its just the whole thing.

There are loads of great things about all of us that might not be there if we werent autistic, but there are also things about us that are anxious and miserable, that i wonder if its part of autism